Life has been a bit stressful lately for us. I am determined to remain positive and keep things in check, but it can be difficult on those days when you just cant keep your head above water. I will say that not getting enough sleep can certainly compound it all. The past week has left us up, down and all around with Miss Layla's diagnosis and undiagnosis. We received blood work back mid week which suggested she had Celiac's as the level was extremely high. We were waiting on the final test to determine the diagnosis when low and behold, it came back negative. This completely surprised us as well as the Pediatrician. In the meantime we had seen the Nutritionist who confirmed that we must keep Layla on the $50 a can formula as it has the most calories (her weight has dropped a bit) and it seems to be the only thing stopping the diarrhea. We are trying to get it covered by medical insurance but we haven't any luck yet.
After speaking with the Pediatrician, she wanted me to contact the Pedi Gi and ask what we could do to get testing for Crohn's done. This runs in the family and it would certainly explain the fevers. Also, she did not feel comfortable with the first blood test being so high. I contacted the Pedi Gi and she told me that she wanted to just wait and do nothing else. Give her body some time to get back on a routine with this new formula and she would check in with me in a few months. I was MAD! RED MAD! (LOL) After venting to my sister, she told me to call the Pediatrician back. (Mind you that this all went down at 4:00PM on Friday) When I did, she was not happy. She said, "Oh no, I dont feel comfortable with that, do you?" I told her no and she immediately gave me a number for a Boston Pediatric Gastro. I called and the earliest appointment I could get was for February 24th. I'll take it. We are on the list for an earlier appointment if a cancellation should arise. All of this rig a ma roo leaves me completely exhausted sometimes. Why does it have to take so long to figure out what is wrong? I just want to figure it out and do what we can to make her feel better! It's so very frustrating!
After speaking with the Pediatrician, she wanted me to contact the Pedi Gi and ask what we could do to get testing for Crohn's done. This runs in the family and it would certainly explain the fevers. Also, she did not feel comfortable with the first blood test being so high. I contacted the Pedi Gi and she told me that she wanted to just wait and do nothing else. Give her body some time to get back on a routine with this new formula and she would check in with me in a few months. I was MAD! RED MAD! (LOL) After venting to my sister, she told me to call the Pediatrician back. (Mind you that this all went down at 4:00PM on Friday) When I did, she was not happy. She said, "Oh no, I dont feel comfortable with that, do you?" I told her no and she immediately gave me a number for a Boston Pediatric Gastro. I called and the earliest appointment I could get was for February 24th. I'll take it. We are on the list for an earlier appointment if a cancellation should arise. All of this rig a ma roo leaves me completely exhausted sometimes. Why does it have to take so long to figure out what is wrong? I just want to figure it out and do what we can to make her feel better! It's so very frustrating!
In the meantime, Hannah monkey was not herself over the weekend. She was quite defiant. Low and behold, she was up all night crying and unable to sleep or get comfortable. As I put her in the car seat this morning I went back in to grab my little ear checker guy (I finally broke down and bought this nifty thing) and of course the left ear read RED and the child should be seen. So we are running her by the Pediatrician's office after school. It is so hard to figure this out with her as she never complains of pain, just acts out in other ways. Defiance, sleeplessness, etc.. Our appointment to get the tubes put back in and adenoids out can not come soon enough!
So that is where we stand today, Monday! Who knows what tomorrow will bring, although I am still totally committed to getting these kiddos on track and feeling better. This is completely the payback I get for putting my parents though hell as a child with my health! LOL.. The asthma, the weird medication reactions, the broken limbs and stitches.. man payback is a (you know what!) I now understand Mom and Dad.. I now understand what I put you through!
I am posting a few pictures of Layla as she was being all too quiet the other afternoon and when I went to find her.. this is what I found. We also let her have her first real treat yesterday afternoon.. an Oreo cookie! She loved every bite.. as you can see!
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