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


7 comments:

  1. Whoa momma! You got a lot on your plate right now! I get it! We are literally going through the same thing with the boys-we have brought these things up to our ped and she has brushed us off. They don't talk-tantrums out the wazoo it's scary but you haven't done anything wrong! It's early and ya'll are doing everything to stay ahead of things. It could be absolutely nothing but her own personality quirks-you're not a bad person for finding your little girl anything but adorable! It's not in a parent's nature to assume something is different with their child. The hard part of being a nurse is that eventually you or someone you love will be a patient. Please don't be so hard on yourself. Love and hugs to your sweet family! It will be okay regardless of the outcome.

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  2. I am about 4 years in the future from where you are right now. It IS scary. And people will tell you that there is nothing going on and all kids develop different and blah blah blah. I have heard it all. In the end, a mother's intuition is usually spot on. I knew something was going on with our son's development when he was around 18 months old. It took another 10 months before I could persuade my wife into getting him evaluated. Not that it is matters, but I was right. Within 10 minutes, the professionals were talking to us about SPD (sensory processing disorder) that often times gets misdiagnosed as Autism (so beware) and from that moment on, I have been his advocate. It is NOT easy, but I promise, it does get better. Try teaching her sign language, it helps so much until the brain can sort out verbal skills, and at some point the language will start. It may not be perfect, but it will evolve. Little Monster barely said 50 words at 3 years old...now he is a 5 year old that DOES NOT shut up. Ever. Haha! That tantrums were the worst. Thankfully those are minimal now. Used to be 10-15 a day and now we maybe see 1 or 2 a month and almost all sensory overload related. I do not want to go on and on and on, but if you need any support or just somewhere to vent, I am willing. Good luck! Reese is a CUTIE!!!!

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    1. You may be right about the SPD.... I've reading more and more and that would make sense. We won't be able to tell for sure until she is a little older but she does interact and make great eye contact most of the time. She seems to be overwhelmed sensory wise with may things. So within the last day we added OT to her regimen. Any advice for SPD would be appreciated!

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  3. I would HIGHLY reccomend the book The Out of Sync Child as a start. There is so much info out there, truly. Just take a deep breath and let it absorb for now. The answers will come.

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  4. Our eldest was diagnosed with auditory processing disorder when she was little and it was a stressful and difficult time back then worrying about the future and the great unknown of how she would develop, but she came into her own eventually and is now quite a remarkable young lady in her own unique way :). Your little girl is gorgeous and you guys are doing everything you can to give her the best start in life possible. Hang in there, one day at a time and don't forget to look after yourself x

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  5. I almost forgot, here is the link to the Sensory Spectrum blog site. It is also in my blog roll if easier. So many resources listed here!!!!

    http://www.thesensoryspectrum.com/

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