Update on Squakies medical issues

As we come upon Squaky's 4th birthday, I figured that I should update everyone on her medical conditions. It has been quite some time since my last update.

Laryngomalacia & Speech - This throat & breathing issue that was supposed to be cured as a baby may or may not have been. When she was younger, she had many problems eating properly. There is no proof that the two are related, but it seems very likely. Over the last 18 months or so, she has been going to therapy for this. She has finally mastered eating properly and now we are solely working on her speech. There are days that I feel like she is doing so well that we don't even really need therapy anymore. Then, I see her talking with other kids her age or younger and realize that while she has progressed greatly, she is still far behind her peers in speech. We continue to attend speech therapy weekly and probably will do so for a couple more years.


Hip Dysplasia - This is something she was born with. Her left hip was not formed properly and is something we have had to monitor at certain points in her life. The last x-ray we had was at age two. At that time, her hip appeared to be forming correctly. Also, her shorter leg had caught up to the longer one. Since all was looking good, the doctor told us that he wouldn't need to see her again till age four. Though he said he wouldn't need to see her for two years, he said that surgery could still be a real possibility. Kids with this problem can still learn to walk, run, and do other activities without a visible side effect. He said that we wouldn't know until age 4 what the outcome would be. We have the x-ray scheduled for the 18th. Our prayer request would be that things have formed normally and that surgery will not be necessary.


Sensory Processing Disorder - This is by far the disorder that affects our lives the most at this time in life. We have periods where her life is so out of control that we don't know how to help her. Currently, she is having problems getting to sleep. No matter how much therapy we work into her day, she just can't go to sleep. We have tried everything the therapist and I know to do (daily at home therapy, swimming, reading, chamomile tea, lavender oil, no tv, etc.). An exam by the pediatrician did not turn up anything else that would be causing this, so we are back to square one with this situation. We continue to experiment with essential oils and the doctor has requested that we go dairy free for a couple weeks to see if that helps. (A dairy & gluten free diet is very successful in helping SPD with many kids. We have just never tried it because our food choices are already so limited.) Until we find what helps her, or her senses return to normal function, unfortunately we have a super tired child on our hands that is so exhausted that she is hyper all day long. This is very trying to the entire family because it effects all of our sleep. Living in a small house, the other kids do not sleep well if they can hear Squaky up, and so they are staying up late every night as well.

Food Allergies - For those who don't know, she is allergic to: oat, apple, all berries, all melon (cucumber included), and pork. Just for good measure, we also don't feed her pears since it is a cousin of both the apple and the strawberry. Though she is allergic to a lot of things, eating (and shopping) is so much easier now. It took a long time to master, but I now know how to read labels very quickly while looking for the many names foods are hidden under. We also now only eat kosher foods, which helps matters so much. I used to think that eating kosher was really expensive and only found in the "Kosher" section of the store. About ten months ago, a friend showed me how to read kosher labels, and of course I researched it more on my own. I am so glad that I was told about the benefits of eating kosher, and shown that kosher foods are actually found in every aisle of the store. Before going kosher, we had many outbreaks that I could not explain. Once I found out that the Rabbi's who oversee companies that are kosher are very strict about cross-contamination, it made so much since why we should eat kosher. Since going kosher, we have not had a single unexplained outbreak. That is huge!! We used to have about one a month! Who knew so many foods could have cross contamination? Kinda scary when you think about it... Many people have asked me when we will start trying these foods again to see if she has outgrown them. At this time, I have no plans to start re-introducing these foods to her. She has had allergic reactions to accidentally sitting in someone's granola bar crumbs, a blue slurpee, and simply picking up an apple. This tells us that she is in fact still highly allergic to oats, berries, and apples.

So, I guess to sum it all up: We have gone from an infant who had trouble breathing, to a baby/todder covered in hives, to a very rambunctious little girl, who despite all these issues, lives a fairly normal life with near invisible disabilities. Though at times living with all these issues can be very stressful, it is the life we have come accustomed to. We love this little girl very much and all the hassles these conditions put us through are completely worth it.