I appreciate this blog. I am a talker (in case you hadn't noticed). My posts are often simply reflective of our reality, of what I have learned from it, and sometimes just putting out what we are going through in hopes I can learn from others who read and have experience, knowledge and insights to share. I process through my thoughts by talking them out. They aren't always positive thoughts. We're all human, read what Little Henry's mom has to write about that. As I read her words, this mom of 4 catching up on her blog as well, updating on how she and Henry have been doing; I marvel in how closely united we all really are.
Our FPIES world has been difficult again lately as Little Man now turns 2 1/2 and we were supposed to be "growing out of it" by now....and in many ways I feel we are being pushed back to the beginning. Little Man is thriving on TPN (IV nutrition), and I am so.very.grateful for that. He has gained 6#- we are about to hit 30# now, as the geneticist that we saw last week pointed out, it is encouraging to see that his body knows what to do with calories, calories that his gut does not have to absorb (or malabsorb in his case). It IS good, it is all very good. But he is now becoming dependant on this TPN, he has less interest in even eating- how do we do trials when he only nibbles? He is 2 1/2 and has no positive relationship with food except to give food to his brothers and watch them eat. And I am struck with the "what if". What if he isn't outgrowing this? What if we don't find him safe foods? What if we find him safe foods that he refuses to eat, or doesn't know how to? What if his body begins to reject the TPN? What if there is something more going on that we are missing? What if there is some metabolic disorder that is compounding his FPIES that we haven't tested for yet? What if this new normal is our normal now? What if?
I trust in God, it is the thread keeping my peace....I have inner peace knowing that His plan is being carried out. My worry remains with what part I am playing in that plan. What does He want me to be doing? Am I doing enough?
Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts
Wednesday, December 14, 2011
Sunday, December 11, 2011
FPIES Island
An FPIES diagnosis can be like being on an island. At first, it feels deserted with you standing alone, when you start to explore, you find out there are others on the island, they help find food, and nourish your survival knowledge and coping skills, and help to feel a little less alone in this new world. And you are assured by others that have been there that there are ways off the island; and you know you too will someday find your way off, and you feel less alone. Then you need something from off the island, and you find a bridge or two and you take them, only to be thrown back to that solitary place, on your island. Bridges to nowhere, bridges that don’t work, bridges to solitary islands themselves. So little is known about FPIES, and Doctors trying to help and yet unable to in this clinical diagnosis with misunderstood mechanisms and complexities, are also on an island- an island often with no bridge connecting to anyone else to help the FPIES patient/family.
Too many times on this journey, we have found ourselves alone on this island. In the beginning, we didn’t know anyone else lived on the island and we didn’t know to look for ways off or invite someone else on for help. Then it became clear that our little man needed more than what we could give him, his illness was becoming out of my scope as a mother. That instinct I had all along that something was wrong, was now a burning fire, and the need to find more bridges to connect our island became the mission. We quickly learned that a clinical diagnosis, was easier to file under “mom not coping” (ie mom is crazy) than to say medical science did not know, understand, much less be able to help. We tried so many times to connect bridges between different islands, but the complexity of little man’s FPIES needed a strong bridge to a specialist….which, after much searching and persistence, we finally located that bridge. We were happy to finally use it and didn’t know if we’d need any other bridges.
Unfortunately, it soon became clear that we were in need of other things for survival on our island so we went in search of other bridges - only to be quickly sent back to our island- our little man has an illness no one wants to touch…..even though he has needs for these bridges to work, they do not. A corn allergy with an allergic symptoms to even an elemental formula is too scary for most to deal with, so it becomes easier to simply send you back to your island, even though this little boy still needs help. It is left up to the parents to find that way, keep searching for another working bridge. Some really, really long bridges are found- but the cost is very high and the journey long to use those bridges; especially when the shorter, closer bridges should work. Last week we found a bridge that other FPIES families have been using, we hope to be able to as well….maybe we don’t have to travel on the long, long bridges; but maybe we still will……
I don't mind the island, I just want off this island long enough to get what is needed for survival….which bridge is that on?
Too many times on this journey, we have found ourselves alone on this island. In the beginning, we didn’t know anyone else lived on the island and we didn’t know to look for ways off or invite someone else on for help. Then it became clear that our little man needed more than what we could give him, his illness was becoming out of my scope as a mother. That instinct I had all along that something was wrong, was now a burning fire, and the need to find more bridges to connect our island became the mission. We quickly learned that a clinical diagnosis, was easier to file under “mom not coping” (ie mom is crazy) than to say medical science did not know, understand, much less be able to help. We tried so many times to connect bridges between different islands, but the complexity of little man’s FPIES needed a strong bridge to a specialist….which, after much searching and persistence, we finally located that bridge. We were happy to finally use it and didn’t know if we’d need any other bridges.
Unfortunately, it soon became clear that we were in need of other things for survival on our island so we went in search of other bridges - only to be quickly sent back to our island- our little man has an illness no one wants to touch…..even though he has needs for these bridges to work, they do not. A corn allergy with an allergic symptoms to even an elemental formula is too scary for most to deal with, so it becomes easier to simply send you back to your island, even though this little boy still needs help. It is left up to the parents to find that way, keep searching for another working bridge. Some really, really long bridges are found- but the cost is very high and the journey long to use those bridges; especially when the shorter, closer bridges should work. Last week we found a bridge that other FPIES families have been using, we hope to be able to as well….maybe we don’t have to travel on the long, long bridges; but maybe we still will……
I don't mind the island, I just want off this island long enough to get what is needed for survival….which bridge is that on?
Wednesday, November 23, 2011
FPIES is ugly, but we remain thankful.
FPIES is ugly...but there is so much to be thankful for! FPIES has shown us how beautiful people are, how caring and empathetic, and helpful.
Recently, we had a fundraiser to raise awareness, a month later and I am still overwhelmed at the response we received. Money raised, in Little Man's name, for The FPIES Foundation, to help future families in more ways than one. To enable The FPIES Foundation to provide assistance and programs, and educational materials (such as a flyer we distributed at a recent Food Allergy Fair, more on that later) to further raise awareness and support for FPIES families following in the same footsteps as we have on this journey. A treasure beyond measure, the gift that will keep giving.
Kindness, empathy, thoughts and prayers for strength and healing....all among the richest gifts we have received from family, friends, neighbors, acquaintances, even complete strangers. God has mysterious ways of showing us how beautiful His world remains- because of the very people who have shared our journey, who have provided us with this support.
God never promised there wouldn't be trials and troubles in this world, He only promised he'd help us through it. This diagnosis can be ugly, but God is giving us the graces to get through it- the strong instincts to know what to do next, the drive to do it, the graces to perservere through adversity, and the support from others. Assurances we are on the path He intends for us and Faith that there is something at the end of this journey.
Recently, we had a fundraiser to raise awareness, a month later and I am still overwhelmed at the response we received. Money raised, in Little Man's name, for The FPIES Foundation, to help future families in more ways than one. To enable The FPIES Foundation to provide assistance and programs, and educational materials (such as a flyer we distributed at a recent Food Allergy Fair, more on that later) to further raise awareness and support for FPIES families following in the same footsteps as we have on this journey. A treasure beyond measure, the gift that will keep giving.
Kindness, empathy, thoughts and prayers for strength and healing....all among the richest gifts we have received from family, friends, neighbors, acquaintances, even complete strangers. God has mysterious ways of showing us how beautiful His world remains- because of the very people who have shared our journey, who have provided us with this support.
God never promised there wouldn't be trials and troubles in this world, He only promised he'd help us through it. This diagnosis can be ugly, but God is giving us the graces to get through it- the strong instincts to know what to do next, the drive to do it, the graces to perservere through adversity, and the support from others. Assurances we are on the path He intends for us and Faith that there is something at the end of this journey.
Monday, November 21, 2011
FPIES Funk
You know that feeling when things are happening faster than you can process? Or when everything around you is all about food (holidays, party’s,…) and your little one can have none? Or when your child’s intolerances continue to stump physicians and you simply just want to feed him and forget this world created by FPIES?
I’ve been in an FPIES funk the past few days. It isn’t the reason I’ve been unable to keep up with my blog, that started with just enjoying our baseline (shhh.don’t tell FPIES), which was kept busy with the work on The FPIES Foundation, but then led to anxiety about upcoming food trials and landed us square in getting an upper endoscopy last week and proceeding to the zucchini trial we are in now.
The upper endoscopy showed mild reddened area’s that are familiar to some past scopes. The plan was for a food trial to begin- zucchini; but the biopsy results back the day we started the food trial showed villi blunting, again. Do we proceed with the food trial? What is the villi blunting from? Is this his normal? Is it related to FPIES or something else? Could he have small bowel bacterial overgrowth, and is this why he did so well on the antibiotics when he had the line infection a few weeks ago? Is every reaction causing villi blunting? Was this from the probiotic? And why? Those ingredients were “safe” for so many months – why would it now cause this? Or was it from the Sorry board game ingestion? We certainly saw symptoms from that. Or, is it from something else in his diet? In his world? A cross contamination from the soap I use to wash his bottles? The exposed sheetrock downstairs (gypsum is made from corn)? The potential cross contamination in the Bob’s Red Mill products I use (they process corn meal on the same lines, anything is possible)? An intolerance to the arrowroot starch in his daily bottles, feeding his small bowel bacterial overgrowth? If this is happening this frequently- without glaring outward signs, then no wonder we’re struggling with passing a food, and no wonder he has persistent and severe anemia. If the reactions aren’t causing just inflammation but causing villi blunting- it would be more severe, and take longer to heal…..and no wonder we are always cycling. It certainly makes sense for why.
Still so much to process, still so much as we continue through a food trial- zucchini….
I’ve been in an FPIES funk the past few days. It isn’t the reason I’ve been unable to keep up with my blog, that started with just enjoying our baseline (shhh.don’t tell FPIES), which was kept busy with the work on The FPIES Foundation, but then led to anxiety about upcoming food trials and landed us square in getting an upper endoscopy last week and proceeding to the zucchini trial we are in now.
The upper endoscopy showed mild reddened area’s that are familiar to some past scopes. The plan was for a food trial to begin- zucchini; but the biopsy results back the day we started the food trial showed villi blunting, again. Do we proceed with the food trial? What is the villi blunting from? Is this his normal? Is it related to FPIES or something else? Could he have small bowel bacterial overgrowth, and is this why he did so well on the antibiotics when he had the line infection a few weeks ago? Is every reaction causing villi blunting? Was this from the probiotic? And why? Those ingredients were “safe” for so many months – why would it now cause this? Or was it from the Sorry board game ingestion? We certainly saw symptoms from that. Or, is it from something else in his diet? In his world? A cross contamination from the soap I use to wash his bottles? The exposed sheetrock downstairs (gypsum is made from corn)? The potential cross contamination in the Bob’s Red Mill products I use (they process corn meal on the same lines, anything is possible)? An intolerance to the arrowroot starch in his daily bottles, feeding his small bowel bacterial overgrowth? If this is happening this frequently- without glaring outward signs, then no wonder we’re struggling with passing a food, and no wonder he has persistent and severe anemia. If the reactions aren’t causing just inflammation but causing villi blunting- it would be more severe, and take longer to heal…..and no wonder we are always cycling. It certainly makes sense for why.
Still so much to process, still so much as we continue through a food trial- zucchini….
Thursday, November 3, 2011
Prayer Blanket
Recently, we received a package in the mail. In the package, was a special gift from a hometown church parish: St.Joseph's Prayer Angels, a beautiful prayer blanket. What an amazing gift, a reminder of how much Little Man is held up in prayer, a reminder of the strength that is given to us in grace's as we need them. A prayer and support wrapped up in a prayer blanket hug.
Prayer Blankets are sewn with love and prayers for those who receive the blanket. This prayer blanket is a symbol of our faith sharing community “covering with prayer the individual who receives it”.
The Prayer Angels of St.Joseph parishes, commit to prayer as they fulfill their part in construction of the blanket. The process involves shopping for material, washing, coordinating fabric, cutting, sewing, ironing and tagging. After the blankets are complete, they are placed on the altar at a Healing Mass and blessed by the priest. Those who are to receive the blanket are held in prayer. These beautiful acts truly transform the blanket into a “PRAYER BLANKET” whose very threads become interwoven with pleas for healing on behalf of the recipient.
Each blanket bears a tag that reads ‘You are covered in Prayer.” This blanket has been prayed over and blessed at St. Joseph Healing Mass. Be Not Afraid, for the Lord said, “I am with you always, until the end of age”. (Matthew 28:20).
This gift of prayer originated at the MD Anderson Hospital in Houston, TX where the chaplain who gave the blankets to the sick found that they so uplifted the patients that she began to deliver them on a regular basis. Blankets were given to hospital patients, the sick at home, the Veteran’s Hospital and cancer support groups. Missionaries presented them to the orphaned, very elderly, and those who were sick in Guatemala and Volograd Russia. The gift was received as another wonderful way that people are doing God’s work.
The Prayer Blanket brings comfort to the suffering and peace to the fearful. When one sees and touches these blankets, they know they are not alone – that they are covered in prayer and there are those who do care about them.
God has used this beautiful ministry not only to touch the lives of countless people who have received the Prayer Blankets while they are going through extremely difficult times in their lives, but the lives of those involved in the ministry as well. We are blessed to have so many people who give abundantly of their time, talents, and treasures, making Prayer Blankets possible.
Prayer Blankets are sewn with love and prayers for those who receive the blanket. This prayer blanket is a symbol of our faith sharing community “covering with prayer the individual who receives it”.
The Prayer Angels of St.Joseph parishes, commit to prayer as they fulfill their part in construction of the blanket. The process involves shopping for material, washing, coordinating fabric, cutting, sewing, ironing and tagging. After the blankets are complete, they are placed on the altar at a Healing Mass and blessed by the priest. Those who are to receive the blanket are held in prayer. These beautiful acts truly transform the blanket into a “PRAYER BLANKET” whose very threads become interwoven with pleas for healing on behalf of the recipient.
Each blanket bears a tag that reads ‘You are covered in Prayer.” This blanket has been prayed over and blessed at St. Joseph Healing Mass. Be Not Afraid, for the Lord said, “I am with you always, until the end of age”. (Matthew 28:20).
This gift of prayer originated at the MD Anderson Hospital in Houston, TX where the chaplain who gave the blankets to the sick found that they so uplifted the patients that she began to deliver them on a regular basis. Blankets were given to hospital patients, the sick at home, the Veteran’s Hospital and cancer support groups. Missionaries presented them to the orphaned, very elderly, and those who were sick in Guatemala and Volograd Russia. The gift was received as another wonderful way that people are doing God’s work.
The Prayer Blanket brings comfort to the suffering and peace to the fearful. When one sees and touches these blankets, they know they are not alone – that they are covered in prayer and there are those who do care about them.
God has used this beautiful ministry not only to touch the lives of countless people who have received the Prayer Blankets while they are going through extremely difficult times in their lives, but the lives of those involved in the ministry as well. We are blessed to have so many people who give abundantly of their time, talents, and treasures, making Prayer Blankets possible.
Tuesday, November 1, 2011
Shhh...don't tell FPIES....
That Little Man has been doing well recently. The only weird symptom is some insomnia that could either be antibiotic related or anemia related. Insomnia but yet some fatigue- so maybe it is both. He has now finished with his antibiotic and the insomnia has evened out but is having some sleep disturbances (crying in his sleep, frequent wakings and not always out of hunger). We have started the probiotic re-trial, and there are some symptoms, as we also saw with when we first started the probiotics, symptoms commonly referred to as “die off” where as the gut flora is changing, the by-products of the “bad” gut flora “dying off” are released into the system and the body has to rid itself of these by-products and it can produce some variable symptoms. The key is that the symptoms are variable- and not building or progressing. Taking it slow with introduction of the probiotics can help control the die off, if the symptoms are too intense to handle. We’ve noticed a few symptoms but mostly we’ve noticed positive symptoms of giddy mood, energy, good appetite, improved talking (ok that could be coincidental but he’s started using 3 word sentences last weekend). We’ve been enjoying having this baseline, makes me anxious to be doing food trials in just a few weeks- I want to just hold onto this time for a bit longer, knowing that the food trials could very well potentially make him sick/in pain….
The set back of the food trials is on my mind a lot, we were all set to go in 2 weeks ago; and that we didn’t- I feel like we’re in limbo, waiting to go to the hospital for the inevitable and yet looking forward to getting it done…and potentially getting some food for his tiny menu from it, or the very least- learning more about how his body is working and why we’re struggling so much with so many foods.
We got blood cultures last week which tell us if the antibiotic course has helped his body fight the PICC line infection, to test for any signs of the bacteria in his line remaining after the long course of IV antibiotics. We got the results today- negative! The line is CLEAR of bacteria, no lingering bacteria to cause an infection! This is such great news and now we can proceed to the plan of food trials, where we were a few weeks ago before all of this happened. I have thought (and wrote here about) the setback this infection has caused but there is a peace of heart knowing that everything happens for a reason. With that Faith, I have been able to get through this difficult time of the infection, sepsis, hospital stay; but I admit I still have had lingering difficulties with not knowing or understanding the plan, the next steps. I’m a planner- so FPIES often has me turned upside down. I’m learning the difference between planning for the future while trusting in my Faith to intervene in my plans as needed.
I will admit that I feel better today though, knowing the infection is clear and a plan (re-plan) is forming. He will get IV iron this week as his hemoglobin is dipping low again (low 7’s now, normal is 11); and then next week he’ll have a baseline endoscopy before food trials the following week.
All in His plans…trust….
The set back of the food trials is on my mind a lot, we were all set to go in 2 weeks ago; and that we didn’t- I feel like we’re in limbo, waiting to go to the hospital for the inevitable and yet looking forward to getting it done…and potentially getting some food for his tiny menu from it, or the very least- learning more about how his body is working and why we’re struggling so much with so many foods.
We got blood cultures last week which tell us if the antibiotic course has helped his body fight the PICC line infection, to test for any signs of the bacteria in his line remaining after the long course of IV antibiotics. We got the results today- negative! The line is CLEAR of bacteria, no lingering bacteria to cause an infection! This is such great news and now we can proceed to the plan of food trials, where we were a few weeks ago before all of this happened. I have thought (and wrote here about) the setback this infection has caused but there is a peace of heart knowing that everything happens for a reason. With that Faith, I have been able to get through this difficult time of the infection, sepsis, hospital stay; but I admit I still have had lingering difficulties with not knowing or understanding the plan, the next steps. I’m a planner- so FPIES often has me turned upside down. I’m learning the difference between planning for the future while trusting in my Faith to intervene in my plans as needed.
I will admit that I feel better today though, knowing the infection is clear and a plan (re-plan) is forming. He will get IV iron this week as his hemoglobin is dipping low again (low 7’s now, normal is 11); and then next week he’ll have a baseline endoscopy before food trials the following week.
All in His plans…trust….
Complete Trust in God
Do not look forward to the trials and crosses of this life with dread and fear. Rather, look to them with full confidence that, as they arise, God to Whom you belong, will deliver you from them.
He has guided and guarded you thus far in life. Do you but hold fast to His dear hand and He will lead you safely through all trials. Whenever you cannot stand He will carry you lovingly in His arms.
Do not look forward to what may happen tomorrow. The same Eternal Father Who cares for you today will take good care of you tomorrow and every day of your life. Either He will shield you from suffering or He will give you the unfailing strength to bear it.
Be at Peace then and put aside all useless thoughts, all vain dreads and all anxious imaginations.
-Saint Frances De Sales
Saturday, October 8, 2011
Another week of progress
We continue on TPN to optimize his nutrition for upcoming food trials. Things have been going fairly well, and another week at baseline, well- sort of. He has been tolerating the TPN pretty well. Overnight feeds at home allows him to be able to run and play all day, and just be normal 2yr.old. TPN supplying 100% of nutrition and no food trials allows us to be able to see him as a 2yr.old boy- learning new things everyday. We've really been enjoying this time with him....something we've only gotten in bits and pieces over the last year; and very little at all in the year prior. You would think we wouldn't even know what his baseline is with all the time he spends away from it, but a mother knows...
We've been enjoying the fall, enjoying the other boys, getting household projects done, and just getting things ready for the hospital admission (still scheduled for Oct.17). He has a scope scheduled for Tuesday, it is the first time in a long time we won't have our GI and I'm a big nervous about it; but it is the other respected GI and he needs to have it done in a long enough time before his food trial so the effects can wear off before the trail.
Coming out of "survival" mode can be an adjustment though, with Little man's FPIES being chronic- we are never sure what the day will bring, sometimes not what the next moment will bring. We have had to build some truly strong coping skills. Although sometimes, I'm still faced with new situations and not sure which way to cope. I am reminded of my Blessings and I continue to put my trust in my Faith.
We've been enjoying the fall, enjoying the other boys, getting household projects done, and just getting things ready for the hospital admission (still scheduled for Oct.17). He has a scope scheduled for Tuesday, it is the first time in a long time we won't have our GI and I'm a big nervous about it; but it is the other respected GI and he needs to have it done in a long enough time before his food trial so the effects can wear off before the trail.
Coming out of "survival" mode can be an adjustment though, with Little man's FPIES being chronic- we are never sure what the day will bring, sometimes not what the next moment will bring. We have had to build some truly strong coping skills. Although sometimes, I'm still faced with new situations and not sure which way to cope. I am reminded of my Blessings and I continue to put my trust in my Faith.
Tuesday, September 13, 2011
Cost of Livin'
I keep hearing this song play on the radio, on my way to and from dropping off the boys from school, taking Little man to appointments, to and from the hospital when he is admitted: Cost of Livin' by Ronnie Dunn and it makes me think of my husband and the weight of the cost of FPIES on our family (and I imagine shared by so many others). The cost is high but the value is immeasurable. The cost of living with this chronic illness is high: formula, special foods, compounded/specific medications, multiple tests to rule out other diagnosis', specialist visits, hospital stays, keeping a family of 6 afloat through all of this.....nothing in comparison to the outcomes of health for our Little Man.
Little man's daddy holds this end of our rope, his dedication to his work provides our family with our cost of living....and by God's graces, we have all we need. Who else tells anonymous donor what we need so it will appear in our mailbox on the very day we need it most? Who else assures donors at our Benefit how much we needed contributions to our Little mans current cares and needs, as much as, we needed contributions to FPIES research? Who else would whisper to family and friends, and friends that are like family, to supply us with groceries? Who else gives strength to a sister to move to live with us while our families needs were so very high that only a sister could step in for? Where else would the messages me received to "fill the boot" for our trip to CHOP, again. Where does the generosity come from to loan us an RV to drive our family to CHOP, again. More than just understanding for sick leave from co-workers but donations of time for more. This is only a partial list of God's graces that surround us like a blanket of warmth and protection, assuring us that He will always provide our needs- in any form He can.
Little man's daddy holds this end of our rope, his dedication to his work provides our family with our cost of living....and by God's graces, we have all we need. Who else tells anonymous donor what we need so it will appear in our mailbox on the very day we need it most? Who else assures donors at our Benefit how much we needed contributions to our Little mans current cares and needs, as much as, we needed contributions to FPIES research? Who else would whisper to family and friends, and friends that are like family, to supply us with groceries? Who else gives strength to a sister to move to live with us while our families needs were so very high that only a sister could step in for? Where else would the messages me received to "fill the boot" for our trip to CHOP, again. Where does the generosity come from to loan us an RV to drive our family to CHOP, again. More than just understanding for sick leave from co-workers but donations of time for more. This is only a partial list of God's graces that surround us like a blanket of warmth and protection, assuring us that He will always provide our needs- in any form He can.
Sunday, September 4, 2011
Don't Quit
I have so much to update on here, so much has been happening over the past month:
I need to get things ready, clean the house, grocery shop, school shopping, family time, so much to do. As I am doing some laundry, putting a load of clothes in- a card falls down from the shelf above the washing machine. It is titled "Don't Quit". It is a holy card, I don't even ever remember seeing it before although I am familiar with the title. Little things like this are all it takes for me, a little sign to reassure we are being taken care of....our needs will be met. There are so many difficult things about this diagnosis but there is plenty to be grateful for. Don't Quit. A fitting and timely reminder.
When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit --
Rest if you must, but don't quit.
Life is strange with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow --
You may succeed with another blow.
Often the goal is nearer than
It seems to a fair and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late when night came down,
How close he was to the golden crown.
Success is failure turned inside out --
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit, --
It's when things seem worst that you mustn't quit.
-- Author Unknown --
- Scope results came back
- Considering TPN
- Functional Medicine
- Decision to hold on TPN
- New Probiotic
- Multi layered treatment plan?
- Back to CHOP?
- Heat rash?
- Progressive weakness and worsening symptoms?
- Scurvy and a PICC line
- CHOP appointments
- The Plan now?
- The FPIES Foundation!
I need to get things ready, clean the house, grocery shop, school shopping, family time, so much to do. As I am doing some laundry, putting a load of clothes in- a card falls down from the shelf above the washing machine. It is titled "Don't Quit". It is a holy card, I don't even ever remember seeing it before although I am familiar with the title. Little things like this are all it takes for me, a little sign to reassure we are being taken care of....our needs will be met. There are so many difficult things about this diagnosis but there is plenty to be grateful for. Don't Quit. A fitting and timely reminder.
When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit --
Rest if you must, but don't quit.
Life is strange with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow --
You may succeed with another blow.
Often the goal is nearer than
It seems to a fair and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late when night came down,
How close he was to the golden crown.
Success is failure turned inside out --
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit, --
It's when things seem worst that you mustn't quit.
-- Author Unknown --
Saturday, August 6, 2011
Support is Everything.
As I mentioned in yesterday's post- we've been busy. Little man has been primarily well and we've been enjoying the moments we can as a family. So, I've been busy and Little man has been cycling (apparently his normal) that reflecting and blogging do not come easily but also because we are in the same cycles and don't like to feel as if I have only negative things to say! I feel guilty that we don't have more good news to share.
There are so many good things that happen everyday, but telling you the little things of a 2yr.olds normal development isn't exciting is it? It is exciting to me, when he says "more please" and "knock knock" (for the joke), and when he picked up 3 dice and turned and played with them and turned them all to the 5's- and then put 2 more beside them to match, when he looks at the number 2 and says "2!", and puts a puzzle together. These are all things a normal 2yr.old is doing....but they mean, and say, so much to me.
Little man looks good, the compliment we have been getting so much of lately. And it IS a compliment, because he DOES look good- since his transfusion, he isn't pasty or pale and he even has a suntan from our week at the lake. And he handled our trips well and he's coping with our schedule....but it is because we work so hard at it. But, if I don't tell you how hard it is- will that make it easier? Does it make it easier to not know how hard it is to assure your chronically ill child is thriving, to assure your other children get the love and attention, time and training they need to become fine young men. It is good for others to see how good Little Man looks, how well he is thriving....it speaks volumes to how hard we work -- even if the one giving the compliment doesn't know that is what they are saying. So, thank you. Thank you for your compliment and your continued prayers, a thank you to all our family and friends who have supported us through all of this.
There are different stages we go through, and we continue to cycle through them; each time getting somewhat easier. But, some things get more difficult....I sat with my little man while he received 2 iron iv infusions, after trying to tell ourselves that we were holding because he "looked" so good and that his other symptoms were so chronic....he fell severely anemic and I sat with him while they poked him 3 x and finally found a heel vein to put blood in him, more blood exposure....to pink and perk and tank him up - so that we could enjoy our vacation time with him and our boys, so that he would not be dangerously sick. I share a lot here on this blog, but we also do a lot privately. I am not looking for your sympathy, in fact I am asking you to please not give it. People who know us, know we do not like/want pity. Our Faith is too strong for pity. Empathy and support, and most of all prayers go a long way. I read something today...."we'll pray and then stand back and see God at work". So profound.
Another very profound reading is a blog about a family with a special needs child. Her post: Amsterdam International highlights the famous "Welcome to Holland" poem written for parents of special needs children. It was a very inspiring and worthwhile read for the thoughts, and stages, that a parent goes through. No sympathy, no pity, never regrets. Unconditional Love (and way too much momma guilt!)
There are so many good things that happen everyday, but telling you the little things of a 2yr.olds normal development isn't exciting is it? It is exciting to me, when he says "more please" and "knock knock" (for the joke), and when he picked up 3 dice and turned and played with them and turned them all to the 5's- and then put 2 more beside them to match, when he looks at the number 2 and says "2!", and puts a puzzle together. These are all things a normal 2yr.old is doing....but they mean, and say, so much to me.
Little man looks good, the compliment we have been getting so much of lately. And it IS a compliment, because he DOES look good- since his transfusion, he isn't pasty or pale and he even has a suntan from our week at the lake. And he handled our trips well and he's coping with our schedule....but it is because we work so hard at it. But, if I don't tell you how hard it is- will that make it easier? Does it make it easier to not know how hard it is to assure your chronically ill child is thriving, to assure your other children get the love and attention, time and training they need to become fine young men. It is good for others to see how good Little Man looks, how well he is thriving....it speaks volumes to how hard we work -- even if the one giving the compliment doesn't know that is what they are saying. So, thank you. Thank you for your compliment and your continued prayers, a thank you to all our family and friends who have supported us through all of this.
There are different stages we go through, and we continue to cycle through them; each time getting somewhat easier. But, some things get more difficult....I sat with my little man while he received 2 iron iv infusions, after trying to tell ourselves that we were holding because he "looked" so good and that his other symptoms were so chronic....he fell severely anemic and I sat with him while they poked him 3 x and finally found a heel vein to put blood in him, more blood exposure....to pink and perk and tank him up - so that we could enjoy our vacation time with him and our boys, so that he would not be dangerously sick. I share a lot here on this blog, but we also do a lot privately. I am not looking for your sympathy, in fact I am asking you to please not give it. People who know us, know we do not like/want pity. Our Faith is too strong for pity. Empathy and support, and most of all prayers go a long way. I read something today...."we'll pray and then stand back and see God at work". So profound.
Another very profound reading is a blog about a family with a special needs child. Her post: Amsterdam International highlights the famous "Welcome to Holland" poem written for parents of special needs children. It was a very inspiring and worthwhile read for the thoughts, and stages, that a parent goes through. No sympathy, no pity, never regrets. Unconditional Love (and way too much momma guilt!)
Monday, July 11, 2011
From the outside looking in?
I am the mother of a special needs child. He doesn't look it from the outside, but he has special needs to maintain his health. He has special diet needs, special allergen needs. Special needs to keep him thriving on his restricted diet, to avoid his very severe and sensitive allergens, to ensure adequate caloric/vitamin/mineral intakes while on a restricted diet, to monitor closely for signs of intolerance's to new additions to his diet...
We have had to lead a fairly sheltered life due to Little Man's needs, although with 3 other active boys, it doesn't always feel like it! That is until we are in situations where we are not sheltered and and then I can't help but wonder what it looks like from the outside looking in....
![]()
We have had to lead a fairly sheltered life due to Little Man's needs, although with 3 other active boys, it doesn't always feel like it! That is until we are in situations where we are not sheltered and and then I can't help but wonder what it looks like from the outside looking in....
....what it looks like for a 2yr.old to be drinking from a bottle?
....what it looks for a 2yr.old to be on an infants schedule?
....what it looks for a 2yr.old to be on an infants schedule?
....what it looks like to be dining out, feeding our other boys but not allowing Little man to even touch the food, especially if we haven't brought his millet puffs or have access to ice?
...what it looks like to have to leave in the middle of a function or event because of the needs of Little Man?
....what it looks to decline a function/gathering altogether because it involves too much food?
We were at a restaurant recently (while traveling) and I caught the glances of a father with 2 young children, and later said to Little man's daddy, "I wonder what other people must be thinking when they see us sitting down to eat and not feeding Sam". To which he, in his wisdom, replied, "who cares. What does it matter what other people think? We are doing what we know we have to do to keep him safe". Which I know, but it still makes me wonder....
....what it looks to decline a function/gathering altogether because it involves too much food?
We were at a restaurant recently (while traveling) and I caught the glances of a father with 2 young children, and later said to Little man's daddy, "I wonder what other people must be thinking when they see us sitting down to eat and not feeding Sam". To which he, in his wisdom, replied, "who cares. What does it matter what other people think? We are doing what we know we have to do to keep him safe". Which I know, but it still makes me wonder....
Tuesday, June 14, 2011
Blessings
There aren't many words that need to accompany these lyrics....it's as if they were written for me, maybe they were. God gives us gifts and graces every moment of everyday to get through our hard times. The graces are there, all we have to do is ask. But I believe they were written for many, and wanted to pass them along, as they were passed along to me (twice now!). It is very fitting of our journey, and how my Faith sustains me through it....You can hear this beautiful song by clicking here: Blessing by Laura Story.
Blessing by Laura Story
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise
Friday, June 10, 2011
A picture is worth a thousand words!
Which is a good thing because I made his tribute video with just 29 pictures to tell 2 years of FPIES....
I love photo's, I am a "scrapper" at heart (but oh, so way-y-y behind on my scrapbooks!). I love to capture and record moments in pictures. Taking a piece of that time to carry forward with us...never forgetting.
So, why would I take pictures of my little man screaming and crying? Because, despite me saying it was "bad"- it was hard to picture just how bad. I was logging everything he ate, how he slept, what his diapers were like; and back in the beginning months of this- I even had a "pain scale" on these daily logs I kept for him. Because he was in pain everyday, the only thing that changed was the degree of that pain. I needed to add another dimension to these journals, I needed to try and do something to help someone, anyone else understand just how rough it was for him, for us.
And so began my FPIES photo file. Capturing pictures of eczema, of crying, of "spots" on his face, of diapers (eeks- I know but you can see microscopic blood zoomed in on the picture that you can not otherwise see when inspecting a diaper!). I have it all in a file. A picture tells a thousand words.
And there are thousands of words behind this video: FPIES: Our Little Man's Journey. 29 pictures....
Picture #1: A new baby boy...our precious 4th little man, just days old.
Picture #2: Something is not right - our eldest, not quite 9yrs.old and wanting to help so badly- picks up his crying little brother while I prepare dinner. The picture wasn't of him being in pain, it was of his big brother helping out...and how proud I was of him for trying. Although, that frown became a signature, he would be sitting there happily cooing and then this frown would come over his face...it was the saddest little frown. It was my eldest who said to me around 5mo...."what happened to him mommy" that helped me to see this was not just "normal" baby crying.
Picture #3: Trying new foods causes me pain- this picture was actually after he was off all foods- but I wasn't taking pictures as much then...but this is what he looked like more and more over the months while we tried to figure out what was going on. This is 3 weeks into no foods, off breastmilk and on Elecare....and the crying was escalating....
Picture #4: Eczema and rashes- in April, he had been off food for weeks, on Elecare and then switched to Neocate. Neocate gave us a little less crying during the day, at first but still much disturbed sleep and a "colicky" baby at night, still very spitty, and this eczema popped out within hours of giving him some dye-free motrin.
Picture #5: Vomitng and agitation -this was in the evening, on nothing but Neocate....by May this crying was a growing and he had been on elemental formula for 3mo....we were growing weary of what to do to help him. That helpless feeling...
Picture #6: Food is meant to nourish me, what could be causing this? What would you do?? A typical day with our little man looked like this, from my perspective....every time I had to put him down to make his brothers breakfast, clean up breakfast, make lunches for school, do laundry, make lunch, do a task for his 2yr.old brother, do the dishes, clean up, make dinner, dinner dishes, bath his brothers....this is what we got....crying, screaming, hold-me-now, clinching to odd inanimate objects (here it was the kitchen towel). We need help, this can't be healthy....
Picture #7: ...At CHOP- the nurse administering the skin prick testing to rule out IgE involvement of allergies, to help with the FPIES diagnosis and more importantly- the plan for care...including the introduction of foods safe at home with strict guidelines for symptom monitoring vs. in-hospital because of risk of anapyhlaxis.
Picture #8: ...Diagnosed with FPIES - this is actually a few months after we came home, and switched his formula- he is becoming such a character, really starting to shine and ham! He is wearing his token CHOP t-shirt we got while there! So cute in green!
Picture #8: Every food must be trialed, it is the only way to know if it will be safe for me - home from CHOP, we feel our first trial needs to be corn. He is not getting any better on the elemental formula and we suspect this is why. This is a picture of him eating grits...and you can see his face/eyes are swollen looking (other foods have had this effect as well)- it is actually our 2nd day trialing. Our first day was a 1/2tsp of whole, pureed corn. We had full symptoms that we would recognize now as a fail but we were so new and he was still so sick daily- it was hard to see what was reaction or what was his "normal". We called CHOP for advisement, we were advised to stop- that it was a clear fail but he had spit up twice but not violent vomiting...isn't FPIES violent vomiting- what if it was something else? The allergist felt it was from the corn allergy but agreed if we wanted to know for 100% sure, because this would mean he would need to come off the elemental formula, we could proceed with 1/2 that dose, and change it to grits instead. (that picture really is a thousand words!)
Picture #9: We trial corn....and "fail"...a mere few hours later, from the last picture- he is in extreme pain.....it would be a few more hours until he violently vomited the contents of his stomach, and then some, all over our floor...and then the diarrhea started, and thick strains of mucus and then blood.....(I have those pictures too but will spare them from you unless you are his GI doctor- whom I have shared them with!)
Picture #10: Why does it hurt so much mommy? We continue to give him Neocate- only now it is hurting him every second of the day. He begins to limit his own intakes of it- surviving on a mere half of his daily needs...We must do something different, but what....
Picture #11: Hemp milk becomes a main part of my new diet....I even posted about it here: Hemp milk arrives, this picture is a few months later when I have "perfected" his homemade formula, building it in in kitchen with 3 ingredients of his 5 safe foods: hemp, safflower oil and arrowroot starch. This corner of my kitchen is where I spend a few hours every other day, making his formula.
Picture #12: And ice is a treat when it is all you can eat.....unfortunately, my building the formula did not go without it's "fails". I initially started with tapioca starch, this resulted in metabolic acidosis and a hospital admission where doctors did not recognize, or understand the mechanisms or effects of his allergy. He enjoys ice as we are forced to put him back on Neocate in his hemp milk, and he begins to exhibit his signs of intolerance- one being an itchy mouth.
Picture #13: I want to sit and eat at the table, just like you...we begin to give him hemp seed cereal- just so he has a "snack" to practice eating, and join us at the table.
Picture #14: My parents explore new foods to find me a safe diet...millet puffs! So exciting! A safe food we found! He loves them! They are tiny and a mess but worth it!
Picture #15: I am happy when we find food that does not hurt my tummy! Peaches! Our 2nd safe food! That fall was a happier time for our family as his menu gave him a few snacks and the hemp milk healed his inflammation and is not triggering his allergy.
Picture#16: trying new ingredients in a recipe with my safe foods....Cookies! His first cookie- made with arrowroot and millet. Unfortunately I mistakenly used baking powder instead of soda in one of the recipes and he had a few nibbles before I realized it. Cream of tarter was also in this recipe and I am still unsure of it's safety. He did enjoy eating it! Crumb by crumb...
Picture #17: ...resulted in a reaction we weren't expecting...(pallor is one of my first stages of reaction)...he was quite fussy and clingy when he got up from his nap that day; so we went outside to play- hoping it was just a "typical" behavior of a 1yr.old...he didn't play, he just sat in my arms. We just tried to make the best of it enjoying a warm fall day with the other boys, not yet knowing how bad it would spiral things...
Picture#18: ...in and out of the hospital.....reactions, severe anemia....he continued to get ill, and his hemoglobin was falling, he was no longer responding to the iron supplements (or they were making things worse?). His hemoglobin fell to a scary low of 5, this picture is of the blood transfusion he had to have to correct his anemia. It was scary but he tolerated it and re cooped his hemoglobin sufficiently (back up to 10).
Picture #19: endoscopy & colonscopy procedures....this, his 3rd endoscopy....following soy reaction, found villous atrophy. We still are not sure if the soy (stopped on day 4) caused the villous atrophy or if he was already reacting to something (his iron supplement?) and soy simply pushed him over....he was a sick little boy.
Picture #20: IV iron, and IV Nutrition...hospital admission for TPN. He is quite swollen by this many days into it (2weeks). He gained a lot of weight but as noticed here- it was a lot of fluid weight. Gut rest healed his inflammation, TPN restored his small intestine villi (where nutrients are absorbed).
Picture #21: I’m so cute on the outside no one can tell how sick I am on the inside...in the fall, before his severe anemia, before his soy challenge, before we started spiraling...on peaches, millet, and homemade hemp milk formula...a happy boy.
Picture #22: Birthday cakes don't have to be made out of food! A picture of us making the most of his birthday- not only were we on the road (coming back from CHOP) but he had no safe foods. His cake was food-free! He loved it!
Picture #23: I am happy when food isn't hurting me...A few days before our hospital admission for TPN. He has villous atrophy, but it did not affect him like his FPIES reactions did. Villous atrophy can be silent, and scary....We were trying to avoid the PICC line and TPN but after 2 weeks of no weight gain (and weight loss) with worsening labs, we knew we could not avoid it. He needed the nutrition. We would be in the hospital from Dec.7-Dec.31.
Picture #24: ...a family who stands by me...Our boys. Our precious little family....
Picture #25: I am quiet and calm....rewind to first days on Hemp milk...a beautiful, happy, calm, sweet little boy- we knew you were in there little man...
Picture #26: I am sweet and strong...a recent photo of our strong little man. We are back to the days in the fall, after we healed him from corn fail and worked through nutrition on his hemp milk formula and passed peaches and millet, before we spiraled....
Picture #27: I have FPIES, a severe food allergy of the gut....a proud little boy with his Allergy awareness/medic alert bracelet. We raise awareness to keep him safe, and to help other families...
Picture #28: His 1yr.photo, shortly before I started my blog....to help others follow our story.
Picture #29: Ok, not a picture, just a slide. I just want to share our story, our experiences, if even just one piece of information can save another family from the pain of an FPIES reaction, or chronic FPIES inflammation....
And here we are, one year later. We have come so far from our first post.
I love photo's, I am a "scrapper" at heart (but oh, so way-y-y behind on my scrapbooks!). I love to capture and record moments in pictures. Taking a piece of that time to carry forward with us...never forgetting.
So, why would I take pictures of my little man screaming and crying? Because, despite me saying it was "bad"- it was hard to picture just how bad. I was logging everything he ate, how he slept, what his diapers were like; and back in the beginning months of this- I even had a "pain scale" on these daily logs I kept for him. Because he was in pain everyday, the only thing that changed was the degree of that pain. I needed to add another dimension to these journals, I needed to try and do something to help someone, anyone else understand just how rough it was for him, for us.
And so began my FPIES photo file. Capturing pictures of eczema, of crying, of "spots" on his face, of diapers (eeks- I know but you can see microscopic blood zoomed in on the picture that you can not otherwise see when inspecting a diaper!). I have it all in a file. A picture tells a thousand words.
And there are thousands of words behind this video: FPIES: Our Little Man's Journey. 29 pictures....
Picture #1: A new baby boy...our precious 4th little man, just days old.
Picture #2: Something is not right - our eldest, not quite 9yrs.old and wanting to help so badly- picks up his crying little brother while I prepare dinner. The picture wasn't of him being in pain, it was of his big brother helping out...and how proud I was of him for trying. Although, that frown became a signature, he would be sitting there happily cooing and then this frown would come over his face...it was the saddest little frown. It was my eldest who said to me around 5mo...."what happened to him mommy" that helped me to see this was not just "normal" baby crying.
Picture #3: Trying new foods causes me pain- this picture was actually after he was off all foods- but I wasn't taking pictures as much then...but this is what he looked like more and more over the months while we tried to figure out what was going on. This is 3 weeks into no foods, off breastmilk and on Elecare....and the crying was escalating....
Picture #4: Eczema and rashes- in April, he had been off food for weeks, on Elecare and then switched to Neocate. Neocate gave us a little less crying during the day, at first but still much disturbed sleep and a "colicky" baby at night, still very spitty, and this eczema popped out within hours of giving him some dye-free motrin.
Picture #5: Vomitng and agitation -this was in the evening, on nothing but Neocate....by May this crying was a growing and he had been on elemental formula for 3mo....we were growing weary of what to do to help him. That helpless feeling...
Picture #6: Food is meant to nourish me, what could be causing this? What would you do?? A typical day with our little man looked like this, from my perspective....every time I had to put him down to make his brothers breakfast, clean up breakfast, make lunches for school, do laundry, make lunch, do a task for his 2yr.old brother, do the dishes, clean up, make dinner, dinner dishes, bath his brothers....this is what we got....crying, screaming, hold-me-now, clinching to odd inanimate objects (here it was the kitchen towel). We need help, this can't be healthy....
Picture #7: ...At CHOP- the nurse administering the skin prick testing to rule out IgE involvement of allergies, to help with the FPIES diagnosis and more importantly- the plan for care...including the introduction of foods safe at home with strict guidelines for symptom monitoring vs. in-hospital because of risk of anapyhlaxis.
Picture #8: ...Diagnosed with FPIES - this is actually a few months after we came home, and switched his formula- he is becoming such a character, really starting to shine and ham! He is wearing his token CHOP t-shirt we got while there! So cute in green!
Picture #8: Every food must be trialed, it is the only way to know if it will be safe for me - home from CHOP, we feel our first trial needs to be corn. He is not getting any better on the elemental formula and we suspect this is why. This is a picture of him eating grits...and you can see his face/eyes are swollen looking (other foods have had this effect as well)- it is actually our 2nd day trialing. Our first day was a 1/2tsp of whole, pureed corn. We had full symptoms that we would recognize now as a fail but we were so new and he was still so sick daily- it was hard to see what was reaction or what was his "normal". We called CHOP for advisement, we were advised to stop- that it was a clear fail but he had spit up twice but not violent vomiting...isn't FPIES violent vomiting- what if it was something else? The allergist felt it was from the corn allergy but agreed if we wanted to know for 100% sure, because this would mean he would need to come off the elemental formula, we could proceed with 1/2 that dose, and change it to grits instead. (that picture really is a thousand words!)
Picture #9: We trial corn....and "fail"...a mere few hours later, from the last picture- he is in extreme pain.....it would be a few more hours until he violently vomited the contents of his stomach, and then some, all over our floor...and then the diarrhea started, and thick strains of mucus and then blood.....(I have those pictures too but will spare them from you unless you are his GI doctor- whom I have shared them with!)
Picture #10: Why does it hurt so much mommy? We continue to give him Neocate- only now it is hurting him every second of the day. He begins to limit his own intakes of it- surviving on a mere half of his daily needs...We must do something different, but what....
Picture #11: Hemp milk becomes a main part of my new diet....I even posted about it here: Hemp milk arrives, this picture is a few months later when I have "perfected" his homemade formula, building it in in kitchen with 3 ingredients of his 5 safe foods: hemp, safflower oil and arrowroot starch. This corner of my kitchen is where I spend a few hours every other day, making his formula.
Picture #12: And ice is a treat when it is all you can eat.....unfortunately, my building the formula did not go without it's "fails". I initially started with tapioca starch, this resulted in metabolic acidosis and a hospital admission where doctors did not recognize, or understand the mechanisms or effects of his allergy. He enjoys ice as we are forced to put him back on Neocate in his hemp milk, and he begins to exhibit his signs of intolerance- one being an itchy mouth.
Picture #13: I want to sit and eat at the table, just like you...we begin to give him hemp seed cereal- just so he has a "snack" to practice eating, and join us at the table.
Picture #14: My parents explore new foods to find me a safe diet...millet puffs! So exciting! A safe food we found! He loves them! They are tiny and a mess but worth it!
Picture #15: I am happy when we find food that does not hurt my tummy! Peaches! Our 2nd safe food! That fall was a happier time for our family as his menu gave him a few snacks and the hemp milk healed his inflammation and is not triggering his allergy.
Picture#16: trying new ingredients in a recipe with my safe foods....Cookies! His first cookie- made with arrowroot and millet. Unfortunately I mistakenly used baking powder instead of soda in one of the recipes and he had a few nibbles before I realized it. Cream of tarter was also in this recipe and I am still unsure of it's safety. He did enjoy eating it! Crumb by crumb...
Picture #17: ...resulted in a reaction we weren't expecting...(pallor is one of my first stages of reaction)...he was quite fussy and clingy when he got up from his nap that day; so we went outside to play- hoping it was just a "typical" behavior of a 1yr.old...he didn't play, he just sat in my arms. We just tried to make the best of it enjoying a warm fall day with the other boys, not yet knowing how bad it would spiral things...
Picture#18: ...in and out of the hospital.....reactions, severe anemia....he continued to get ill, and his hemoglobin was falling, he was no longer responding to the iron supplements (or they were making things worse?). His hemoglobin fell to a scary low of 5, this picture is of the blood transfusion he had to have to correct his anemia. It was scary but he tolerated it and re cooped his hemoglobin sufficiently (back up to 10).
Picture #19: endoscopy & colonscopy procedures....this, his 3rd endoscopy....following soy reaction, found villous atrophy. We still are not sure if the soy (stopped on day 4) caused the villous atrophy or if he was already reacting to something (his iron supplement?) and soy simply pushed him over....he was a sick little boy.
Picture #20: IV iron, and IV Nutrition...hospital admission for TPN. He is quite swollen by this many days into it (2weeks). He gained a lot of weight but as noticed here- it was a lot of fluid weight. Gut rest healed his inflammation, TPN restored his small intestine villi (where nutrients are absorbed).
Picture #21: I’m so cute on the outside no one can tell how sick I am on the inside...in the fall, before his severe anemia, before his soy challenge, before we started spiraling...on peaches, millet, and homemade hemp milk formula...a happy boy.
Picture #22: Birthday cakes don't have to be made out of food! A picture of us making the most of his birthday- not only were we on the road (coming back from CHOP) but he had no safe foods. His cake was food-free! He loved it!
Picture #23: I am happy when food isn't hurting me...A few days before our hospital admission for TPN. He has villous atrophy, but it did not affect him like his FPIES reactions did. Villous atrophy can be silent, and scary....We were trying to avoid the PICC line and TPN but after 2 weeks of no weight gain (and weight loss) with worsening labs, we knew we could not avoid it. He needed the nutrition. We would be in the hospital from Dec.7-Dec.31.
Picture #24: ...a family who stands by me...Our boys. Our precious little family....
Picture #25: I am quiet and calm....rewind to first days on Hemp milk...a beautiful, happy, calm, sweet little boy- we knew you were in there little man...
Picture #26: I am sweet and strong...a recent photo of our strong little man. We are back to the days in the fall, after we healed him from corn fail and worked through nutrition on his hemp milk formula and passed peaches and millet, before we spiraled....
Picture #27: I have FPIES, a severe food allergy of the gut....a proud little boy with his Allergy awareness/medic alert bracelet. We raise awareness to keep him safe, and to help other families...
Picture #28: His 1yr.photo, shortly before I started my blog....to help others follow our story.
Picture #29: Ok, not a picture, just a slide. I just want to share our story, our experiences, if even just one piece of information can save another family from the pain of an FPIES reaction, or chronic FPIES inflammation....
And here we are, one year later. We have come so far from our first post.
Monday, May 23, 2011
I pace myself.....
Another lesson learned, but something I already knew but needed reminded of, due to a son with a chronic illness. With a chronic illness, you take things day by day...sometimes moment by moment. It is difficult to plan ahead, at least without a plan for the plan, for the plan. It is difficult to have a to-do list that I expect to accomplish in a day, in a week, in a month!
Years ago, little man's daddy was in the Navy, long before little man or his brother T. were a twinkle in our eyes, but we did have the big boys - who were the ages of the little boys' now when he went on deployment. A 6mo.deployment that we turned into a year long separation because we moved home before deployment to be near family during the separation, as he was leaving the Navy after that deployment. Our two older boys were born in the Navy, it was the only life they knew; and we had come to realize it was not the life we wanted them to know. We rarely saw our extended families, we missed special occasions, weddings, funerals and holidays. We moved every few years and we lived on a poverty-line budget. We were proud to be a Navy family but we felt God was telling us this life would not be the family life we wanted. The separations are hard. There are little words to express how difficult they are. And they are frequent. I hold much respect for the families that continue to do this everyday. The family we created in the Navy is unlike any other. Although we were far from our extended family, we had family to celebrate holidays and birthday's with, to share the joys and the tears, to even share family dinner's with! I am proud of the time we served in the military (any military wife knows what I mean when I say "we" served).
Those separations taught me something, with the responsibilities of a single mom and the struggles of a stay-at-home mom, and the worry of a military wife.....I learned to pace myself. Those lessons are paying off now.
Little man's daddy is no longer in the Navy he so proudly served for 10years but he continues to be in public service as a fireman, gone for a mere 24hours at a time, unless he is picking up a shift like tonight in which case he will be gone for 3days. The best gift I have is the lesson I learned back in those deployment days....to pace myself. The older boys have become all too familiar with my "I'm only one person with two arms and two legs" phrase....which of course can't be complete without the octopus joke and references- just why can't mom's be an octopus? Probably because that would only make it worse- we would try and do it all....and we'd get all tangled up doing it! This is the visual reminder to the boys that I am only one person and can only do so much. I pace myself.
With FPIES, I pace myself even more. I make adjustments to our family, to our lifestyle, to my expectations....all to pace myself. I pace myself in the morning in case it is an afternoon of holding a screaming/crying baby. I pace myself throughout the day in case it is a night of frequent wakings, or holding a crying/screaming baby.
How does that poem go? Cobwebs be quiet, dishes go to sleep....I'm rocking my baby and babies don't keep. It's been a blessing in disguise as I am someone who likes to do it all before I can relax....I'm learning to appreciate the relaxing a bit more. Little Man has taught us so much.....
And, as I write this.....I wanted to write a post on how well his Benefit/Fundraiser did, and share some pictures but I am not finished uploading those pictures because Little Man has had a roller coaster day- re-cooping from the trip and long and exciting weekend. He seems to be coping well and adjusting back into his routine better than I anticipated so I am glad to see that.....and I'm pacing myself....especially since as I am trying to write this- he has awoken 3 times.....last night he was up at least 6 times (with daddy)- so I'd better head to bed and hope it doesn't happen again tonight!
Years ago, little man's daddy was in the Navy, long before little man or his brother T. were a twinkle in our eyes, but we did have the big boys - who were the ages of the little boys' now when he went on deployment. A 6mo.deployment that we turned into a year long separation because we moved home before deployment to be near family during the separation, as he was leaving the Navy after that deployment. Our two older boys were born in the Navy, it was the only life they knew; and we had come to realize it was not the life we wanted them to know. We rarely saw our extended families, we missed special occasions, weddings, funerals and holidays. We moved every few years and we lived on a poverty-line budget. We were proud to be a Navy family but we felt God was telling us this life would not be the family life we wanted. The separations are hard. There are little words to express how difficult they are. And they are frequent. I hold much respect for the families that continue to do this everyday. The family we created in the Navy is unlike any other. Although we were far from our extended family, we had family to celebrate holidays and birthday's with, to share the joys and the tears, to even share family dinner's with! I am proud of the time we served in the military (any military wife knows what I mean when I say "we" served).
Those separations taught me something, with the responsibilities of a single mom and the struggles of a stay-at-home mom, and the worry of a military wife.....I learned to pace myself. Those lessons are paying off now.
Little man's daddy is no longer in the Navy he so proudly served for 10years but he continues to be in public service as a fireman, gone for a mere 24hours at a time, unless he is picking up a shift like tonight in which case he will be gone for 3days. The best gift I have is the lesson I learned back in those deployment days....to pace myself. The older boys have become all too familiar with my "I'm only one person with two arms and two legs" phrase....which of course can't be complete without the octopus joke and references- just why can't mom's be an octopus? Probably because that would only make it worse- we would try and do it all....and we'd get all tangled up doing it! This is the visual reminder to the boys that I am only one person and can only do so much. I pace myself.
With FPIES, I pace myself even more. I make adjustments to our family, to our lifestyle, to my expectations....all to pace myself. I pace myself in the morning in case it is an afternoon of holding a screaming/crying baby. I pace myself throughout the day in case it is a night of frequent wakings, or holding a crying/screaming baby.
How does that poem go? Cobwebs be quiet, dishes go to sleep....I'm rocking my baby and babies don't keep. It's been a blessing in disguise as I am someone who likes to do it all before I can relax....I'm learning to appreciate the relaxing a bit more. Little Man has taught us so much.....
And, as I write this.....I wanted to write a post on how well his Benefit/Fundraiser did, and share some pictures but I am not finished uploading those pictures because Little Man has had a roller coaster day- re-cooping from the trip and long and exciting weekend. He seems to be coping well and adjusting back into his routine better than I anticipated so I am glad to see that.....and I'm pacing myself....especially since as I am trying to write this- he has awoken 3 times.....last night he was up at least 6 times (with daddy)- so I'd better head to bed and hope it doesn't happen again tonight!
Tuesday, May 17, 2011
Front page news!
Just in time for Food Allergy Awareness week (last week), an article on Little Man's FPIES in a hometown paper...the front page!! It was published in the Northern Watch. The author did a wonderful job telling our story of our FPIES journey. It is raising awareness to this type of Non-IgE allergy.
Our little man has what has been coined as "Atypical FPIES", this is due to his chronic ingestion of his main trigger. There is little research into chronic FPIES but a few articles are beginning to unravel it. His symptoms differ some from "classic" FPIES. Classic FPIES is where the research has been, the research has not caught up to where Little Man and so many other FPIES and Protein Intolerant children are. We have hope that by continuing to share our story, it will help to raise awareness to the dimensions within FPIES that so many of these kids experience. And, so that families like ours will not feel they are alone. It was others' sharing their story, their experiences, their journey that helped us see we are not alone....and that although our son has a rare allergy, he can be helped, he can heal. And most of all, he can grow and thrive- despite all his struggles.
Our little man has what has been coined as "Atypical FPIES", this is due to his chronic ingestion of his main trigger. There is little research into chronic FPIES but a few articles are beginning to unravel it. His symptoms differ some from "classic" FPIES. Classic FPIES is where the research has been, the research has not caught up to where Little Man and so many other FPIES and Protein Intolerant children are. We have hope that by continuing to share our story, it will help to raise awareness to the dimensions within FPIES that so many of these kids experience. And, so that families like ours will not feel they are alone. It was others' sharing their story, their experiences, their journey that helped us see we are not alone....and that although our son has a rare allergy, he can be helped, he can heal. And most of all, he can grow and thrive- despite all his struggles.
Saturday, May 14, 2011
Just A Kid...
"I'm just a kid mom"....words from our Little man's big brother, T. (3 1/2yr.old) when I he wants to point out that he is not as big as he typically boasts to be. But definitely not a baby anymore either.
As we near Little Man's 2nd birthday, I am reminded of this more and more daily. He is leaving his baby years, full toddler now, and before we blink will be a preschooler. As another FPIES mom recently reminded me, "the days are long but the years are short" (Thanks Heather).
The days ARE long, some days so much longer than others but one day bleeds into the next and before we know it, the year has passed. We are approaching a year since Little Man's diagnosis and yes, we are still trapped in FPIES but I guess that shouldn't be a surprise- no one said he'd outgrow it by 2yrs. Studies do show that around age 3 the body matures and becomes less reactive. We can hope. The years ARE short. And in a few years, hopefully we can look back on this as a time of growing.
It seems I am getting a lot of reminders lately about the coping realities of a chronic illness....often by other people giving some piece of welcomed empathic advice; but now more and more by Little Man himself. How he bounces back as soon as he finally feels better post illness/reaction- how he chatters and chatters all day- as if making up for lost time when he is so silent when not feeling well. "Thank you", "sorry", "excuse me", "what?..Ooh", and lets not forget "No!" are words he added just in the last few days. Once he finds a reason to say them, he will repeat and repeat. His oldest brother, W. plays the counting game...W. will say "1", Little man will follow with "2", W. "3", Little Man, "4"- they go to 10 like that.
Just when we think he's been too sick to learn something new, he "wakes up" after a relapse reaction and "shines"- reminding us all that he is "just a kid".....
This week has been Food Allergy Awareness week. FAAN (Food Alllergy & Anaphylaxis Network, a major food allergy foundation in the US) put out some educational and informational pieces. This one: "Ten things children with food allergies want you to know" is a great reminder that our kids just want to be kids....despite their allergy and chronic illness.
Ten Things Children with Food Allergies Want You to Know
©2011 Gina Clowes
1. I long to be included.
I would like to look, act and eat like everyone else. I’d like to buy my lunch and sit wherever I want. I know I can’t, but I’m happy when someone cares enough to provide a safe potato chip, cookie, or Popsicle® for me. It’s nice when I can have something similar to what the other kids are eating and I love it when I can eat the same thing as everyone else. Whenever it’s possible, please think to include me!
2. I’m scared I could die from my food allergies.
I’ve heard my parents and teachers mention “life-threatening” food allergies and I remember having some reactions where I felt very sick and really scared. I saw how frightened my parents were too. Sometimes, I could use a little reassurance that I will be okay.
3. I feel like I’m the only one sometimes.
If you have a support group or know another way for me to meet other children who have food allergies, I would really like that. It would be nice to know that I’m not the only kid who has food allergies. Having another friend with food allergies in my classroom or to eat with me at lunch would help me too.
4. I get confused when grown-ups offer me food.
I know I’m supposed to be polite and listen to grown-ups, but my parents have told me I should only take food from them. When you offer food to me (especially candy), I’d like to take it but I’m unsure and don’t know what I should do.
5. If grown-ups kiss me, right after they’ve eaten something I’m allergic to, I’ll get itchy spots.
If your dog licks me, I’ll get itchy spots too. I don’t feel quite brave enough or know how to tell you this, but I’m hoping you will remember; if you’ve just eaten something that I’m allergic to and then kiss me, I may get hives. So please don’t kiss me right after you’ve eaten that particular food
6. I’m embarrassed when people fuss over what I’m eating.
I know I have to eat my own safe food, but it’s easier for me when I’m not singled out. Sometimes, I feel very embarrassed when grown-ups ask me a lot of questions. More than anything, I just want to fit in.
7. I hear all adult conversations about my food allergies.
My ears perk up when I hear grown-ups mention my name or my food allergies. Please don’t pity me or act terrified because that will cause me to feel frightened. Food allergies are just one part of me. Instead, let me overhear you list all the wonderful things about me!
8. Sometimes I’m sad about having food allergies.
It’s hard to be the only kid in the class not having a birthday cupcake and having to eat something different from my box of “safe treats.” What makes it worse is knowing this will happen a lot throughout the year because there are 20 or more other birthdays in my class. I know it’s not the end of the world, but from my perspective, it’s pretty tough at times.
9. I’m watching you! You may think that I’m too little to notice, but I know when you forget my epinephrine auto-injector and return home to get it.
I watch you every time, when you’re reading the list of ingredients on my bag of candy. You are my role model and I’m learning how to manage my food allergies from you!
10. I will do about as well as you do.
My parents and other grown-ups “can-do” attitude will help me cope with the challenges of living with allergies and ensure that food allergies don’t stop me from being everything I was meant to be!
Adapted from the eBook Ten Things Children with Food Allergies Want You to Know.
©2011 Gina Clowes http://www.allergymoms.com/
As we near Little Man's 2nd birthday, I am reminded of this more and more daily. He is leaving his baby years, full toddler now, and before we blink will be a preschooler. As another FPIES mom recently reminded me, "the days are long but the years are short" (Thanks Heather).
The days ARE long, some days so much longer than others but one day bleeds into the next and before we know it, the year has passed. We are approaching a year since Little Man's diagnosis and yes, we are still trapped in FPIES but I guess that shouldn't be a surprise- no one said he'd outgrow it by 2yrs. Studies do show that around age 3 the body matures and becomes less reactive. We can hope. The years ARE short. And in a few years, hopefully we can look back on this as a time of growing.
It seems I am getting a lot of reminders lately about the coping realities of a chronic illness....often by other people giving some piece of welcomed empathic advice; but now more and more by Little Man himself. How he bounces back as soon as he finally feels better post illness/reaction- how he chatters and chatters all day- as if making up for lost time when he is so silent when not feeling well. "Thank you", "sorry", "excuse me", "what?..Ooh", and lets not forget "No!" are words he added just in the last few days. Once he finds a reason to say them, he will repeat and repeat. His oldest brother, W. plays the counting game...W. will say "1", Little man will follow with "2", W. "3", Little Man, "4"- they go to 10 like that.
Just when we think he's been too sick to learn something new, he "wakes up" after a relapse reaction and "shines"- reminding us all that he is "just a kid".....
This week has been Food Allergy Awareness week. FAAN (Food Alllergy & Anaphylaxis Network, a major food allergy foundation in the US) put out some educational and informational pieces. This one: "Ten things children with food allergies want you to know" is a great reminder that our kids just want to be kids....despite their allergy and chronic illness.
Ten Things Children with Food Allergies Want You to Know
©2011 Gina Clowes
1. I long to be included.
I would like to look, act and eat like everyone else. I’d like to buy my lunch and sit wherever I want. I know I can’t, but I’m happy when someone cares enough to provide a safe potato chip, cookie, or Popsicle® for me. It’s nice when I can have something similar to what the other kids are eating and I love it when I can eat the same thing as everyone else. Whenever it’s possible, please think to include me!
2. I’m scared I could die from my food allergies.
I’ve heard my parents and teachers mention “life-threatening” food allergies and I remember having some reactions where I felt very sick and really scared. I saw how frightened my parents were too. Sometimes, I could use a little reassurance that I will be okay.
3. I feel like I’m the only one sometimes.
If you have a support group or know another way for me to meet other children who have food allergies, I would really like that. It would be nice to know that I’m not the only kid who has food allergies. Having another friend with food allergies in my classroom or to eat with me at lunch would help me too.
4. I get confused when grown-ups offer me food.
I know I’m supposed to be polite and listen to grown-ups, but my parents have told me I should only take food from them. When you offer food to me (especially candy), I’d like to take it but I’m unsure and don’t know what I should do.
5. If grown-ups kiss me, right after they’ve eaten something I’m allergic to, I’ll get itchy spots.
If your dog licks me, I’ll get itchy spots too. I don’t feel quite brave enough or know how to tell you this, but I’m hoping you will remember; if you’ve just eaten something that I’m allergic to and then kiss me, I may get hives. So please don’t kiss me right after you’ve eaten that particular food
6. I’m embarrassed when people fuss over what I’m eating.
I know I have to eat my own safe food, but it’s easier for me when I’m not singled out. Sometimes, I feel very embarrassed when grown-ups ask me a lot of questions. More than anything, I just want to fit in.
7. I hear all adult conversations about my food allergies.
My ears perk up when I hear grown-ups mention my name or my food allergies. Please don’t pity me or act terrified because that will cause me to feel frightened. Food allergies are just one part of me. Instead, let me overhear you list all the wonderful things about me!
8. Sometimes I’m sad about having food allergies.
It’s hard to be the only kid in the class not having a birthday cupcake and having to eat something different from my box of “safe treats.” What makes it worse is knowing this will happen a lot throughout the year because there are 20 or more other birthdays in my class. I know it’s not the end of the world, but from my perspective, it’s pretty tough at times.
9. I’m watching you! You may think that I’m too little to notice, but I know when you forget my epinephrine auto-injector and return home to get it.
I watch you every time, when you’re reading the list of ingredients on my bag of candy. You are my role model and I’m learning how to manage my food allergies from you!
10. I will do about as well as you do.
My parents and other grown-ups “can-do” attitude will help me cope with the challenges of living with allergies and ensure that food allergies don’t stop me from being everything I was meant to be!
Adapted from the eBook Ten Things Children with Food Allergies Want You to Know.
©2011 Gina Clowes http://www.allergymoms.com/
Saturday, April 16, 2011
Echo's
Almost a year ago now, I met a fellow FPIES mom on the babycenter boards. She and I quickly formed a bond, she having 3 boys, I having 4. Our FPIES children being the babies, being just days apart in age.
I know, you're thinking- how many FPIES mommies are you gonna reference here on this blog? We share so many commonalities, in such an isolating diagnosis, it is hard not to. When one of them does a post of something that is exactly in my head, it seems silly to re-write the same words....or does it? It illustrates how much we do share. Yesterday, I was discussing this very thing with someone who asked me how Little Man was doing.....Darkness....
As I said these same words, I thought these same thoughts....this makes me smile and sad all in the same breath. I smile because of the resiliency of an innocent child and how grateful I am that God gives him that. But I am sad that he has to go through so much pain and not know what a life without it would even be like. It is the definition of a chronic illness, and many people go through it....but it does seem unfair that someone so little would have to. My continued prayer (and Faith) is that it is making him a strong soul....
I know, you're thinking- how many FPIES mommies are you gonna reference here on this blog? We share so many commonalities, in such an isolating diagnosis, it is hard not to. When one of them does a post of something that is exactly in my head, it seems silly to re-write the same words....or does it? It illustrates how much we do share. Yesterday, I was discussing this very thing with someone who asked me how Little Man was doing.....Darkness....
As I said these same words, I thought these same thoughts....this makes me smile and sad all in the same breath. I smile because of the resiliency of an innocent child and how grateful I am that God gives him that. But I am sad that he has to go through so much pain and not know what a life without it would even be like. It is the definition of a chronic illness, and many people go through it....but it does seem unfair that someone so little would have to. My continued prayer (and Faith) is that it is making him a strong soul....
I can't do it alone....
There, I said it. I've been saying it a lot lately actually. I have always said it but maybe not out loud as much. Maybe it is because in the beginning of the spiral of events, I was seen as not coping. Maybe I wasn't....but I do believe I was coping as best as I could have for the time (but certainly could not have stayed in that frame of mind for long). My not coping was then viewed as my son's illness not being as serious as it was. The self doubt, stress and anxiety that brings certainly doesn't encourage coping skills.
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
Little Boys & Big boys...
Little boys, big boys. We have 4 boys and they are evenly divided in age: big boys: W. is 10 and J. is 8 years old and little boys T. is 3 and of course, Little Man S. is 1 years old. No, we didn't plan it this way at all. God did. We love it.
The big boys have shared a room since they were the little boys' ages (3 and 1)- even if we have the extra room in the house, we feel it is important for their brother bonding to share a room....even if they do put the invisible line down the middle of the room!
When our T. (our third son) was born, he had his own room, for a bit; but once we found out we'd be adding a little man #4- we knew the arrangement for rooms would be nicely divided: Little boys and Big boys.
The little boys shared a room for only a few short months and then Little Man's sleep was becoming increasingly disturbed. We decided, for the rest of everyone, that we would move his brother into the room with his big brothers....just for awhile. We put a twin bed in Little Man's room and the nursing/co-sleeping began.....until we were down to a few mere hours of actual sleep a night before his sleep was just too disrupted from pain. We've done a lot of night time dances....living room recliner, living room couch, living room floor, if he would've slept in our bed- I would've done it in a heartbeat but he didn't like our bed!
All this time, his brother is still in the big boys room. We made the best of it, the big boys- although too big to admit it- enjoyed story time as we had done in years past with them- in the days of Dr.Seuss and Berenstein Bears- before Boxcar children and Magic Treehouse. Nighttime prayers while cuddled under warm covers, everyone all in one room; with no fear of waking Little Man with our night time routine.
A few months ago, desperate for more sleep, and to establish good sleep habits at the same time. I, once again, moved the twin bed into Little Man's room. There is where I slept, no longer nursing him, but assuring him that his room IS where we sleep, is where we are comfortable and safe. And, specific to Little Man, right there to warm up a middle of the night bottle when it is needed (and 2-4 are needed through the night to maintain his weight). A few weeks of this and Little Man has finally started to sleep better, or at least not be so scared or lost when he does wake up. He wakes because he is hungry (outside of food reactions- those remain long nights of disturbed sleep and tummy aches).
The other day, I decided it was time to move his brother back in the room with him. The first thing T. said was "W. and J. will be so happy"!! And they were. Over a year ago, we didn't ask them to share a room with their little brother, and they didn't complain. But they sure showed their excitement when they got home from school and discovered the move! Just another piece of the everyday of this chronic illness that we don't question, that the boys dont' question, but when we can get some "normalcy" out of it, some reprieve from the extraordinary circumstances, we all have J.'s reaction "YES! Finally!"
The big boys have shared a room since they were the little boys' ages (3 and 1)- even if we have the extra room in the house, we feel it is important for their brother bonding to share a room....even if they do put the invisible line down the middle of the room!
When our T. (our third son) was born, he had his own room, for a bit; but once we found out we'd be adding a little man #4- we knew the arrangement for rooms would be nicely divided: Little boys and Big boys.
The little boys shared a room for only a few short months and then Little Man's sleep was becoming increasingly disturbed. We decided, for the rest of everyone, that we would move his brother into the room with his big brothers....just for awhile. We put a twin bed in Little Man's room and the nursing/co-sleeping began.....until we were down to a few mere hours of actual sleep a night before his sleep was just too disrupted from pain. We've done a lot of night time dances....living room recliner, living room couch, living room floor, if he would've slept in our bed- I would've done it in a heartbeat but he didn't like our bed!
All this time, his brother is still in the big boys room. We made the best of it, the big boys- although too big to admit it- enjoyed story time as we had done in years past with them- in the days of Dr.Seuss and Berenstein Bears- before Boxcar children and Magic Treehouse. Nighttime prayers while cuddled under warm covers, everyone all in one room; with no fear of waking Little Man with our night time routine.
A few months ago, desperate for more sleep, and to establish good sleep habits at the same time. I, once again, moved the twin bed into Little Man's room. There is where I slept, no longer nursing him, but assuring him that his room IS where we sleep, is where we are comfortable and safe. And, specific to Little Man, right there to warm up a middle of the night bottle when it is needed (and 2-4 are needed through the night to maintain his weight). A few weeks of this and Little Man has finally started to sleep better, or at least not be so scared or lost when he does wake up. He wakes because he is hungry (outside of food reactions- those remain long nights of disturbed sleep and tummy aches).
The other day, I decided it was time to move his brother back in the room with him. The first thing T. said was "W. and J. will be so happy"!! And they were. Over a year ago, we didn't ask them to share a room with their little brother, and they didn't complain. But they sure showed their excitement when they got home from school and discovered the move! Just another piece of the everyday of this chronic illness that we don't question, that the boys dont' question, but when we can get some "normalcy" out of it, some reprieve from the extraordinary circumstances, we all have J.'s reaction "YES! Finally!"
Saturday, April 9, 2011
It does not define us...
It is natural to pull away from things we don't understand, even to be a little afraid. A friend/family member has a little one with a chronic illness too complex to keep up with, so you don't say anything because - where are the words? The words they lacks to explain how it feels and the words you lack to express how much you care. What if you say the wrong thing? What if you say something offensive?
Let me be the voice of a mom of a child with a chronic illness and say that if your thoughts, prayers and encouragement are coming from a place of love and support- there is no such thing as saying the wrong thing. Your words will never be offensive, your encouragement will always be appreciated, and your prayers will always be felt.
I have a dear friend, who in the beginning of this- didn't ask how she could help, she just helped in ways she would want to be helped if it were her in the situation. She has stayed by my side through all the many ups and downs of this chronic illness of my son that has rocked our worlds. She grounds me, she knows "Joy" is still there- even if buried under the weight of FPIES some days. We talk about "normal" things in life...and I enjoy it. Not only do I enjoy it, I am thankful to her for it. I still have "normal" things to worry about, to get done in a day, to think about...I have 3 other boys with all of their individual growing needs and personalities; I have a husband with whom I share a history stronger than a chronic illness but it still bends us some days; I have a large extended family who, without their compassion and understanding of our place right now, we would fall apart from; I have supportive friends- near and far, whose support and prayers we feel daily.
One of the main reasons I want to do the benefit for Sam & FPIES is to raise awareness, not only of what FPIES is and looks like for those that don't know; but of what our life is within it. To help others understand it even more, and that even though it encompasses a large piece of our everyday lives right now - to keep Little man thriving, growing, and happy; it does not define us. We are just a family- made of the same people we were before FPIES- wading our way through this in the same ways anyone would if they were in our shoes.
Let me be the voice of a mom of a child with a chronic illness and say that if your thoughts, prayers and encouragement are coming from a place of love and support- there is no such thing as saying the wrong thing. Your words will never be offensive, your encouragement will always be appreciated, and your prayers will always be felt.
I have a dear friend, who in the beginning of this- didn't ask how she could help, she just helped in ways she would want to be helped if it were her in the situation. She has stayed by my side through all the many ups and downs of this chronic illness of my son that has rocked our worlds. She grounds me, she knows "Joy" is still there- even if buried under the weight of FPIES some days. We talk about "normal" things in life...and I enjoy it. Not only do I enjoy it, I am thankful to her for it. I still have "normal" things to worry about, to get done in a day, to think about...I have 3 other boys with all of their individual growing needs and personalities; I have a husband with whom I share a history stronger than a chronic illness but it still bends us some days; I have a large extended family who, without their compassion and understanding of our place right now, we would fall apart from; I have supportive friends- near and far, whose support and prayers we feel daily.
One of the main reasons I want to do the benefit for Sam & FPIES is to raise awareness, not only of what FPIES is and looks like for those that don't know; but of what our life is within it. To help others understand it even more, and that even though it encompasses a large piece of our everyday lives right now - to keep Little man thriving, growing, and happy; it does not define us. We are just a family- made of the same people we were before FPIES- wading our way through this in the same ways anyone would if they were in our shoes.
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