Tuesday, March 17, 2015

A new low for me

It has been a while since I have written on here. Life has been a little hectic to say the least. Since the new year we have been so busy with appointments for Reese and I.

Update on our little miss Reese:

Since about ten months old I noticed she had been pulling at her ears more and more and the pediatrician saw fluid on both ears. That in combination with a speech delay sent us to get her hearing tested. She had some mild hearing loss. So we saw an ENT doctor and she had ear tubes placed a week ago.  The procedure was a bit rough for Reese, she ended up with an IV and a breathing tube which is not usual. But she was still able to go home the same day. That whole process took a few months. Before the tubes were placed we got Reese involved with Theraplay and Early Intervention for speech. She hasn't made much progress. Which leads me to think the ears weren't her only problem. I guess I have been blind to some other symptoms until the last few weeks. Her communication is very weak. She does not say any words, she does not wave or point. She has complete temper tantrums (more than your average toddler). Reese also struggles with severe anxiety surrounding separation from me, crowds or public places. I am really starting to think she is on the Autism Spectrum. She will flap her arms with stress, rock from one foot to the other at times, spin in circles, walk with her chest out and head held high, swing her arms back and forth and turn her head side to side. At times I can't get her attention and she is in her own world. Shorty after she was born I remember the doctor being concerned about her head circumference. She kept measuring a bit big. So we would have to keep going back and having it rechecked, until we eventually got a head ultrasound which was normal. After the "normal head ultrasound" I pretty much stopped worrying about it. But now I feel so so so stupid for that. Because they had in her chart this whole time the diagnosis of "Macrocephaly." I never even thought of that alone potentially causing a problem for Reese, especially after a normal HUS. How could I not think this was a problem? I am a nurse, I should know these things. I did have plenty of people telling me not to worry and that Reese was fine.... but I should have known otherwise. Did I miss other delays she has? I still feel very alone in this whole thing. Most people I talk to tell me I am over thinking things. I haven't talked to many people about it, basically only my wife and mom. I don't want to label Reese, and I don't want to advertise this. But I know now I am not over thinking things. I've spent the last two days pretty much a crying mess. I feel terrible, like I got punched in the gut. To think that my precious baby is trapped inside of her head, that kills me. It feels almost like a grieving process. I don't want to sounds ungrateful or pitiful. I will love her no matter what. But I feel terrible guilt. Did I do something wrong? Did the IVF cause this? Did something happen in pregnancy or delivery? Is she lacking something I could've given her? Can I handle this? These are the things that make question God... Why?

I am scared shitless. I don't know what her future holds. Autism has a very wide array of functions. Will she be high function? I am hopeful. I want to do anything and everything I need to do in order to get her the best possible treatment. And by treatment I mean intervention, because Autism is one of those very misunderstood and untreatable diagnosis'. Yes, I am freaking out.. can you tell? I do need people to tell me I am doing everything I can, like my daughter's EI teacher did this morning. I just hope I can get out of this funk, because it is certainly not going to help my situation. We are making changes, swim class (she loves it), gymnastics (which she hates but we may change it to something else), limiting TV if she gets it at all (she gets sucked in), trying to get her to play with us rather than by herself,  etc. It's a start. We have also talked about daycare for her development.

But my BEAUTIFUL baby girl is doing awesome, she is healthy and smart and that's all that really matters to me. She has so much love for those close to her and Chris and I love her to pieces. She is our everything and nothing will change that. She is literally still attached to breast feeding but we are weaning to 1 to 2 times a day.

Aside from all of that our family as a whole is doing pretty well. I am still having issues with my heart. I went to see a new cardiologist yesterday and he referred me to a electrophysiologist that will do an AFIB ablation. So that may be in my near future. My biggest issue is that I am overweight and I want to exercise but every time I try my heart goes into irregular rhythms. No medications have helped... so we shall see. I think it's all about risks versus benefits.... like life itself lol.

Here are some updated pictures :)

She loves my turkey meatballs

 Right before her tubes

On the way homes from her tubes, she threw up right after that lol

At the local park yesterday

At gymnastics today