Secret of a special needs mom

Now that Gesina is getting older and babies her age are gaining more skills, the gap between Gesina and her peers is widening. This means people now look at me a little differently when I'm out and about with my girl. This is going to get much worse as she no longer fits in her infant car seat. Why does that matter? Because now when we go to the grocery store or Target, she has no where to sit. She doesn't have the head or trunk control to sit in the cart. You know what the only solution is? I get to bring Gesina into the store in her wheelchair/stroller combo. Picture me coming at you down the aisle while I push my 15 month old in a wheelchair/stroller and pull a cart. Good thing we both have a flair for the dramatic because we are going to get lots of attention.

But you know what my secret is? That I love my child more than most moms love their child. Gesina is my inspiration, my hero, my survivor and if I end up demonstrating half the strength she has in the last year, then I will have lived a full life. When people find out about Gesina, one reaction is they apologize to me and offer pity about the circumstances of her birth. What they don't realize is that I don't need their pity. I'm the luckiest mom out there because I gave birth to my hero. I pity those who haven't had to fight for their child as much as I have in her 15 months of life. All this fighting for her, all the hazing of 37 doctors appointments in one year, has left me loving this child more than anything or anyone on earth. When Gesina farts and startles herself, I couldn't laugh harder. When she opens her mouth with enthusiasm because she loves banana oatmeal I couldn't be more proud. And when she sends one of her slow smiles towards her papa just because she finds his voice funny, my heart couldn't explode with love any more than it just has. Gesina doesn't have to run faster than other kids or use more words than kids her age for me to be proud of her or love her more. I love her just for her spunk and her audacity to be alive when many have told me should wouldn't make it. Anything she does from here on out is just icing on the cake.

So when you see a mom with a special needs kid, don't assume she is wallowing in self-pity. Look at the moms eyes and you may see that she is just like me. She may have already realized that she too has a secret, that her child is the coolest person she knows and that she wouldn't change a thing about him/her. Gesina may have a laundry list of health conditions that place her in the disabled category, but she is so much more than that. For those of you lucky enough to have met her, she is extremely dramatic, sends many sarcastic messages with her eyes, loves getting hugs and has continuously chapped cheeks from getting them kissed, likes to play "baby fingers" on her iPad with Rufus the cat, and thinks her daddy is the funniest man alive. Just imagine how much more personality she is going to share with us as she gets older!

Long time, no post!

Gesina's one year anniversary from being discharged from the NICU has come and gone (January 27th). To mark the day we did exactly what I said I wouldn't do after her nightmarish Halloween... She had doctors appointments all day. The day started with her vomiting her whole feeding in her carseat. After frantically hosing her and the car seat down, off we went to Milwaukee to see her Physiatrist (Cerebral Palsy doctor). Her CP doctor and therapists have decided it's time to start giving Gesina botox injections... yep, you read that correctly. She had botox injected into both biceps and her hamstrings. The theory behind it is here. I helped hold her down but the needle was pretty thin so she didn't completely lose it. Next, I whisked her off to get her PEG tube switched to a g-tube "button". I had read that this was a rather quick procedure so I wasn't too worried that Gesina hadn't eaten yet and I didn't want to feed her and THEN have the hole in her stomach leak while we changed the button. But alas, the training session lasted about an hour and a half. I kept jumping ahead of the nurse doing the training and she kept slowing me down. After the training, when she found out I was a professor, she finally realized why I kept jumping ahead. She had a script and a set pace and she was going to keep to it! Finally after the training, it was time to get Gesina's PEG tube out... they essentially "rip" it out! Imagine pulling a grape with a tube attached through a whole in your stomach the width of a straw.  Boy did she scream! She was essentially inconsolable for about an hour afterwards. We went to radiology to ensure the placement is correct and headed home.

At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.

Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!

Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.

Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)