February Struggles...

After my last post William and I spent three days at Strong Memorial Hospital. William needed fluids to rehydrate via IV and also some blow by oxygen. He had a chest x-ray which showed broncholitis and continued to vomit in the emergency department; so we were admitted. Although I do not like bringing William to the hospital I must say that the nurses and doctors we have worked with have been wonderful. I will not hesitate to bring William back to Strong if I think it is in his best interest. Would I rather keep him at home? of course! but I don't have oxygen, IV fluids, or nursing care available at our home.

I have to say that since being discharged we have had a very difficult several weeks. William has still been vomiting far to often, still seems congested, borderline dehydrated (according to the urine chem strips); often refuses fluids and has had some awful seizures. I am so sleep deprived that my ears ring and I have no idea if I am spelling correctly!!! William, I am sure, is feeling even worse; poor guy....

We have been working with the Ketogenic dietician weekly to fine tune this diet and try to control the seemingly worse seizures. I am prepared to continue with the diet for another couple months. We will see what changes Spring brings....

On a positive note; I am taking William to be evaluated for aquatic therapy with a physical therapist at CP Rochester on Monday! I am excited about giving him some new opportunities for growth and of course to be in the water. Lets just hope he does not have a seizure and vomit in the pool!!

William and I are also starting another round of visiting preschools for next Fall. I would really love for William to be part of a preschool program and receive services outside of the home next year. Our PT recently told us that he feels William has not made any progress in the past six months and that if I choose to keep him home in the Fall he is only recommending consult PT visits once a month!!!!!! This said when my son does not roll, sit, stand or walk..... I am a little angry....... I have had time to process this and have some thoughts to share with this PT on Monday. Not only has it been winter time when many medically fragile children struggle with health alone but William has also had a very difficult time adjusting to the Ketogenic diet. To say that he has made no progress is harsh. William is a fighter and is always making small gains.... large motor is just very difficult for him given the area of his brain malformation. He is grasping much better with his fingers and making more consistent eye contact. He smiles more despite having such a rough winter and pays more attention to books and toys.... He also seems to be gaining a little more strength in his trunk.

So keep tuned.... Let see how March goes!! Hopefully Spring is just around the corner....

Cheers for Me; Thoughts on Willie

I recently had some personal good news; the lump, duct, and other tissue from my biopsy came back benign! Great news and such a relief!! During my last appointment with the surgeon he said the incision looks good but the entire area (especially deeper tissue) will take up to a full year to heal completely. Even my follow up mammogram was pushed back until a years time!! The fact that I am constantly lifting my 40 pound son certainly is not helping the healing process but serves as a reminder that I need to stay physically strong.
Speaking of my big boy; he has been very sick these past few days. Thoughts and prayers are much needed. The whole family has been fighting a very bad cold but the difference with William is that instead of blowing out/ or coughing up mucus he vomits. I mean Vomits with a capital V.... he has not kept down any food or liquids for two days now. The main concerns for a child with William's lack of mobility and core strength are aspirating on the vomit and dehydration. It is very hard for me as a mother to watch him vomit so forcefully and not eat. The poor boy is so wiped out that he sleeps most of the time he is not vomiting. I have stopped trying to get full Keto meals into him... just applesauce, whipped cream, and liquids. Feeding is slow going and nerve wrecking. He has remained in Ketosis though and has had very few seizures.
I find during these times that I am high strung with nervous energy. Everyone senses my mood and reacts.... even the dogs are acting out. So I try to watch clips of movies that soothe me or listen to relaxing music; anything to tame the mommy beast. I mean I can't have Ella looking back on her childhood and thinking she had a mother who was a raving lunatic.....