An update on how the eating is going: It's not going so hot.
Here's the thing, I figured once we had food - all would be well, happiness would be restored in our home and Annabelle can eat something. What I DIDN'T consider however, now that Annabelle is allowed Sweet Potatoes, she thinks this opened the flood gates to ALL foods. I overlooked this thought process completely. We are all eating a dinner around the table, and she knows she can eat sweet potatoes, but doesn't understand why she cannot also eat our chicken, broccoli and sweet potatoes with the goodies like the rest of us. It's actually been harder than I anticipated.
The other downfall to introducing foods is how long it's taking her little body to start to digest solid food again. This isn't a comfortable process for her in the least. Each time we try to offer a portion of sweet potatoes, she spends the next several hours and night crying. I am still trying hard to decide whether or not it's just the process of digesting solid food, or if this is some type of reaction she's having. We're going to try to start taking a couple different approaches to getting her to eat the food from now - hopefully they will help provide her some relief.
GERD
For some terrible reason I had trouble believing that Annabelle could still be suffering from such intense reflux, she's almost 2 years old! Isn't this an infant thing? During the week she stopped waking during the nights and the pain seemed to start disappearing, I tried to wean off so many doses of the Omeprazole.. I quickly learned this was a terrible idea and it resulted in Annabelle hysterically in pain. This did provide me with a pretty clear trial/error and answered my lingering question, "Just how intense is her GERD, how big of an issue is it really?" - I will absolutely be keeping Annabelle on the Omeprazole twice a day and continue to maintain the same dosage. I am glad to know now that her GERD is well managed, but discouraged to recognize just how much a problem it still is. This is something that I will bring up with the GI if we appear to have any more issues down the road.
Speech
Yesterday was spent with a lot of time scheduling and speaking with someone at Pedicatic Connections; the wonderful ladies we use for Annabelle's BT, OT and ST. We will now be switching Annabelle from working with a behavioral specialist, to primarily a speech therapist! Annabelle's behavior, and her communication with us has dramatically improved the last several months after working with the therapist, her frustration level is managed much better and I have learned so many ways to help soothe her anxiety during medical procedures (sometimes they work, other times they don't, but at least I have some pointers up my sleeve to try when things get intense). Annabelle is trying so very hard to talk and use her communication with words lately. I have seen her blossom in her speech, she absolutely without a doubt is not even close to where she should be at 20mon, but she is trying and seems to have an interest in learning to speak finally. I believe it's the perfect time to bring in a Speech Therapist when the time allows during the weeks between medical appointments. We tentatively have scheduled these to begin every Wednesday at 9:30a; and in our home of course.
Medical Update
Dr. Young and I continue to touch base almost daily, sometimes a little longer. We have had several conversations regarding Annabelle's behavior lately. We are most concerned with the lack of energy she seems to have, and when she does have energy, how it comes in spurts and then she crashes very hard and fast afterwards. She is sleeping a lot, and when she does sleep, she is sleeping heavily on the nights she is not in pain. When she is in pain, it comes in very irregular waves and I cannot pinpoint what brings them on. I also cannot figure out to save the life of me, where the pain is coming from. We are discussing often her level of anxiety and emotionally how she is maneuvering through this ordeal. She is becoming more and more clingy (which on one hand, I absolutely love that she wants to snuggle and be held close most times), on the other hand, this is not a normal or healthy behavior to want to be held and anxious as often as Annabelle is. Under any circumstances do we blame her for demonstrating this behavior, but it is worth watching closely and helping her through each and every wave to continue to try to enjoy life. Seizures are spreading out and not occuring nearly as often as they were before, but times in which she stares at a wall and is 'spacey' is increasing. The nervousness and how clingy she is before and after her seizures isn't over though, she still demonstrates this behavior very often.
How are we/I holding up? The truth?
It's such a hard balance. I am struggling, I will not lie. Whatever energy I have possessed to keep me moving forward and keep the smile on my face, and keep my focus and drive in absolute 'over-drive', has left. It's gone and I am stuck in this defeated, exhausted body. I am absolutely worn out, physically and emotionally. I am exhausted more than you can imagine.
I am struggling each and every day to go home and stay productive, continue to prepare and deliver a well balanced meal on our table, keep the house cleaned, clothes washed and put away, appointments scheduled on our family calendar, Belle's medical books organized and up to date, her journals noted with the days updates/changes/highlights/lows, the blog updated, the dog fed, Mady tickled, both girls bathed and in cute jammies, 1 .. 2 .. 3 books at bedtime before prayers and lights out, groceries in the fridge, phone calls and emails answered, routine appointments: my own doctors appt, entire family eye appt, Mady dentist, work focused and meeting deadlines, etc etc etc etc etc. I am struggling and I feel like I am truly starting to fall short. It's hard and I know that I can cut myself slack, I do know that, but it's hard. I don't like feeling like I am coming unraveled. I don't like having any dishes in my sink before I go to bed, I don't like saying my prayers at night and reflecting on the lack of time I spent with my kids because I just wanted to go to bed as soon as I got home. I know this hard time in our lives will pass soon, I do. It's just very hard :(
Watching your two beautiful girls playing gives you the most energy in the world. But then watching your youngest baby girl crying her eyes out and having to look at her and think "Im so sorry hunny, I don't know what's wrong, I don't know how to help you, I can't do anything more than I already am....... and next week you will be crying just as loud, just as hard, you will hurt just as miserable as you are now and I won't even be able to promise you then that it will stop. Next week will hurt, the following week will hurt and maybe even the following......". It really starts to tear you down :'( It's the reality we are living in our home. Our small perfect little castle in Chester, VA.. The lights that are dimly lit at 2am as we are rocking a sick baby, this is our life, this is our reality, this is my hell. I pray this ride is over soon for my baby girl, for my family - I pray all our prayers are answered and she is blessed with relief from the pain in her body. With that.. I will get my energy back, until then, I will fight and fight to help her and comfort her each and every day. But right now, we are very tired.
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