Hi, my name is Amanda and my husband Brent and I have been together since high school. We got married when I was 19 and had our girls after we finished college. I have a teaching degree in both regular and special ed from birth to third grade. My hubby is an IT guy and loves nerdy things. We have two girls, Jillian, age 4 and Lydia who is 6 months old. Our house is a mix of pink, purple and tutus. We love Disney World and are often dreaming or talking about things at the parks. We live in the Midwest with all the fun of the seasons that come with that. Both of the girls are considered undiagnosed and in Jillian’s 4 years she has had over 100 doctors’ appointments and between the two girls they have gone into the OR 9 times. We joke that we see the people at our local children’s hospital more than we do our friends and family.
Miggy: Welcome Amanda! Thank you so much for sharing your special needs journey with us today and especially for sharing your family with us. You have 2 little girls ages 4 years and 6 months, who both have rare, undiagnosed genetic disorders. Can you take me back to the day you knew your first daugther had special needs? Was it during pregnancy, shortly after birth, or sometime after that? Even though you don’t have a diagnosis, do you remember how you felt when a doctor(s) confirmed that something was not quite right? Can you compare those first thoughts and feelings with how you feel now?
Amanda: When Jillian was born she had issues with latching from the start and within her first 24hr they were putting her bed at an incline to help with the vomiting, at one point the hospital staff had to go look for more sheets because she had puked on all of them on the floor. They kept telling me some kids puke a lot after birth, but the puking didn’t stop and by 10 days old she was losing weight too quickly. She would make this horrible sound after eating and I kept saying something wasn’t right, but as a first time mom doctors shrugged us off until she hit 3 months old and was vomiting across the room and not gaining weight. We were admitted into the hospital for several days and when we were getting ready to go home a doctor looked at me and said she was truly happy we were getting to go home because she thought something was really wrong with our baby and that we might not have been leaving the hospital with her. That is a very sobering experience.
Within a month, we were back in the hospital for 9 days and they placed an NG tube because nothing they could do would get the vomiting and choking to stop. At that point I knew this was something bigger than a little reflux like everyone first thought.
As Jillian has gotten older was have tackled things as they came up. She was put on oxygen when she was 2 years old because we noticed as she learned how to walk she started resting more so we did a pulse oxygen study and found that her pulse ox drops into the 80s when she is walking. This past fall we added leg braces into the mix because she was spraining her ankles often from falling. I think we get into a routine for a while and then our life gets shaken up by a new additional thing, but even though it has been a process of learning what help she needs, when we add new things now it doesn’t feel as scary as it did in the beginning.
Miggy: Then your second daughter came along, when did you know that she too was affected? Was it easier, harder, or just different–in other words, how would you describe your feelings the second time around?
Amanda: Within minutes of being born Lydia vomited all over Brent and we joked that she was ours. We didn’t take that to mean much at the time because sometimes that happens after a baby is born, but within 24hr we were elevating her bed too because of vomit and choking. Lydia took a different approach then Jillian, Jillian in the beginning tried to eat more to deal with the pain of reflux where Lydia just became uninterested in eating. By 3 weeks old Lydia was a half pound under her birth weight despite us trying to feed her every hour around the clock. I knew at that point that we were dealing with the same thing and that we needed to get her help. Thankfully we have a great pediatrician who agreed and sent us to be admitted at our local Children’s hospital.
Going through it a second time has the advantage that we already had a great team of doctors set up and I already knew the medical language and the machines and such that were once scary were now a part of our typical life, but at the same time there is something to be said about ignorance being bliss because I knew what was going to happen and how hard some of it was going to be.
Miggy: Can you describe your daughters’ symptoms and explain how their needs affect your day-to-day life?
Amanda: GI: Their initial swallow looks great, but their throat motility is not right. Once things get to their stomach things either stay in their stomach for a long time or quickly reflux back out (sometimes a mix of both). When things are going up and down at the same time in the throat, some of it ends up in the lungs causing aspiration. Jillian has constipation issues as well. They both have GJ tubes and are fed into their J for about 18 hours a day and their g port is drained. They both can not eat anything by mouth. We start the girls feeds at 10pm each night and fill their pumps every 4 hours. We take their pumps with us everywhere we go!
Muscles: Both girls have muscle weakness and they both get weekly PT. Endurance is also a struggle. We have just started to process for getting Jillian a wheelchair for times when we are out of the house and she wants to play with other kids but her body can’t keep up. This fall Jillian got leg braces because she was falling so often and spraining her ankles. Currently Lydia still can’t roll over so at the moment it is working to my advantage because I can still get her down in one spot and she will stay there.
Temperature: Neither of the girls regulate their body temperature well. It can be 70 degrees and they will be dripping in sweat just sitting still. They also both start vomiting and struggling to breathe outside when it is below 30 degrees so we really have to balance our time outside
Immunity: Jillian stops breathing after getting vaccines and no one knows why, and since they have the same thing we have not done any vaccines with Lydia. We had to pull Jillian out of daycare and I quit my teaching job because she would get every illness that went around. After ending up in the ER every month for 6 months straight due to illness we made the choice to keep her home and her illness rate has dramatically dropped.
Miggy: What are the biggest worries you face for your girls? On the flip side, what are your hopes and dreams for them?
Amanda: My biggest worry is I often say I feel we are playing wack-a-mole with band-aids. We treat symptoms as they pop up but can’t plan for the future or work to prevent things. As Jillian is getting older we are having to up her oxygen and we have already caught Lydia’s oxygen starting to dip when she plays so we are guessing that she may end up on oxygen as well someday. I try really hard to live in the moment, but sometimes my mind wanders and I start to worry about the future for the girls. They are both very determined but I worry about their bodies failing.
My prayer for my girls is that they show the world God’s love. I see them doing just that all the time by them being themselves. From Jillian wanting to send texts to a fellow preschooler with medical needs that this little girl is brave and she loves them, to Lydia helping to heal people’s heart from past pains by being her cuddly smiley self. I hope my girls always continue to live in a way that points people back to God.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Amanda: We laugh about things all the time at our house. One day we were out and I asked my husband if he remembered to flush one of the girls. Flushing a feeding tube line is when you put water through it, but after I said it and we are standing there holding a baby who can’t use a toilet all I could think about it what other people must have thought of my question. We have had feeding tube bags start leaking someplace, to us no biggy but oh the looks make us giggle (it’s no different than a bottle of formula spilling). We always clean it up ourselves but it always makes others so worried. Right now, Lydia is at the age where she will grab onto anything near her and that includes Jillian’s oxygen line so the sister rivalry at our house right now is over the oxygen line, it becomes tug of war with Jillian yelling “I need this to breathe” and Lydia laughing, we always break it up quickly but we always giggle a little. My motto is you have to keep laughing or you will cry.
Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Amanda: Approach my kids like you would any other kids. Jillian loves to play with other kids and will happily answer questions when other kids ask. It is no big deal to her and she only get upset when someone pulls at her tubes.
Situations get awkward when people are around my kids with something contagious because I become ninja woman trying to get my kids away from the illness quickly. It’s not to upset the other person, but I don’t find fun in flying down the interstate in the back of an ambulance because someone was knowingly around my kids when they were ill.
The only other thing is don’t ask my kids what is wrong with them–that implies that they are broken. We had a situation once where the person checking us out at a store asked Jillian what happened to her face because she wears oxygen. Then Jillian was sitting there asking me what happened to her face. We are fine with questions, but remember that my kids are people and they can hear what you say.
Miggy: I would imagine that having two children with undiagnosed conditions can be a very isolating experience. Do you have any coping strategies or support systems that have been helpful to you? Do you have any advice for moms who may be going through a similar experience?
Amanda: It is hard because there is no support group out there for this mystery disorder because no one knows what it is. We have found great support though through meeting other families with special needs even though our kids don’t have the same thing. Our local children’s hospital is a ways from our house so we stay at Ronald McDonald House sometimes and that has been an amazing place to connect with other families. We are also fortunate to have the support system around us, between our church, family and friends, we are really blessed. I also find blogging to be very therapeutic, which is funny because in school I hated writing and I struggle with spelling. (You can find my blog at brownandpinkpolkadots.blogspot.com)
Miggy: Finally, what is the biggest lesson you’ve learned since becoming a special needs mom?
Amanda: I have learned to look at the world as a lot bigger than just me. I have learned that my timeline isn’t as important as doing what others need when they need it. I have become passionate about how I can help other people and use our experiences to make things easier for others. Being a special needs mom is hard but so worth it.
Amanda this was wonderful–thank you. I loved this line, “The only other thing is don’t ask my kids what is wrong with them–that implies that they are broken.” For anyone reading this who may think this is simply semantics, or parents being sensitive, let me tell you–it’s not. I have heard this sentiment often from other special needs moms and feel the same way myself. We think our children are perfect just the way they are. We don’t see them as less than or deficient. Words matter. And yes to “looking at the world as a lot bigger than just me.” Kids have a way of doing that to us don’t they? Thanks again Amanda and best of luck to you and your sweet family. I hope you eventually are able to find some answers and direction for your daughters. They are darling.
Wasn’t that great? I feel like I learn something new every time I read and share these stories. I have more great spotlights coming up so stay tuned! Please email me at thislittlemiggy at gmail dot com if you or someone you know would like to participate in the special needs spotlight. I love sharing these stories and am humbled and grateful to each and every family that participates!
Have a great weekend
XO,
Miggy
Your blog is an inspiration. You are very blessed.
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