We now have an answer for why our son has been struggling so much medically. It turns out he has a genetic mutation in a gene SHOC2 which causes a condition called Noonan Syndrome-Like Disorder with Loose Anagen Hair. This is all new to us, we only found out about it yesterday. It’s been even more difficult to get our minds around it because Dad is still recovering from his surgery. From what I can tell so far the diagnosis is overall good news. Speaking to other parents whose children also have this condition, it’s quite possible our son will grow out of his feeding difficulties. It’s also not a degenerative disease, so whatever he accomplishes won’t be lost to the condition as he ages.
I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.
Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.
In response to the recent flurry of discussion around how to keep our special needs children well, one of the moms in our support group graciously agreed to donate printable signs for medically fragile children. I asked for a name to credit, and the creator generously declined.
We, as special needs parents, spend a lot of time fighting off illness. It’s difficult to explain to friends and family members what’s necessary to keep our kids well, and what they can do to help. I’ve listed a few common reasons special needs kids just can’t afford illness, as well as what friends and family can do to help in each case.
Support groups are one of the most helpful things I’ve found to keep my sanity. There’s nothing quite like sitting down and talking through your problems with people that deal with the same issues you do each and every day. I vaguely remember what it was like before I joined them, but mostly its a blur. I knew nothing about tube feeding when they placed my son’s nasal gastric (NG) tube in the hospital. If not for our home care nurse coming once a week I would’ve been completely and utterly lost.
A few people have told me I appear to be handling things really well and have my life together. I thought about why, and it’s because of my support network I’m able to stay calm and keep going. Without them my sanity would scatter to the wind within a matter of days.
In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!
Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.
In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.
In my experience, when people look for growth opportunities they usually talk about things like traveling, training, or networking with a specific community of people. I’ve done all of these things, and they certainly do expand your horizons. For me, none of them have done nearly as much to grow me as a person as caring for our son with feeding difficulties.
After talking to other moms, I’ve come to understand it’s different to care for a child without health problems. Then, you’re balancing between how much attention is appropriate to give them versus how much independence you can gain for yourself to accomplish your tasks for that day. The balance is different for us. We know exactly how much attention our son needs, and most of it is spent making sure he’s fed and actively performing his assigned physical therapy exercises. I don’t think of it as less time for him is more time for me to do what I need to do. Less time for him is slower progress toward walking and crawling independently.
In ICD-9-CM, if your child has feeding difficulties or is labeled as failure to thrive (FTT) the code used for the purposes of insurance billing is, “…ICD-9-CM 783.3 Feeding difficulties and mismanagement.”(1) This seems at first glance to make sense, but if your child has a medical condition that is keeping them from gaining weight, it’s extremely hurtful to see the terms, “feeding,” and “mismanagement,” grouped together in their records. It doesn’t go unnoticed, and several mothers I’ve talked to have been emotionally upset by the code. It’s difficult to explain to them it’s just for insurance billing purposes when it’s part of their child’s official medical documentation.
I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.
I didn’t plan to stay home with my son. I thought I would give birth, spend a couple weeks snuggling him, and then place him in a daycare close to my work where I could visit him during the day if I chose to do so. My husband and I had always evenly split the chores. With both of us working, we figured we could hire someone to come in and help once a week. It was a great plan for us and we were ready to execute it over a month before our son was even born.