Saturday, September 8, 2012

The One With An Update On Paige

A friend of mine mentioned to me last month that I haven't posted anything about Paige & her adventures with her doctors lately.  Honestly we haven't had much of anything new happen, until lately.

**Consider this your warning... it's a long post**  :)

Just in case you're not in the loop, Paige's pediatrician has been watching several things about Paige since she was born (an odd and small head shape, her eye problems/ptosis, her delay in speech, etc.), so she suggested we see a geneticist.  We were seeing a geneticist, who did several tests, but none of them came out with results to give us any answers. Only one test came back with something not normal & it was an ultrasound.  We found out that she has a bicornate uterus (a split uterus), a partial fallopian tube & they couldn't tell if she had ovaries or not.  They said unless we do an MRI on her uterus & ovaries, we'll have to wait until she's a teenager to find out more information about that.  Although I am SO grateful to find that out so early, it didn't answer any of our questions.  Basically we stumped the geneticist. :)

Paige has always been on track for all developmental milestones except for speech.  She's a very smart girl, she knows about 60 signs & everyone is always so impressed with how much she understands.  We've been working with a speech therapist for about 9 months now, but haven't seen the normal amount of improvement in that time frame. 

I know that Paige will eventually catch up with her speech, but I've also known for a long time that something was just off.  Besides speech therapy & working with Paige to talk all day every day, we haven't seen any other specialists lately.  We honestly didn't know where to go from there... until about a month ago.

We were driving home one Sunday night & Paige was trying to say one of the maybe 5 or 6 words she knows & she couldn't.  She started to cry and sign please (because she wanted help).  Maybe it's the pregnancy hormones, but I broke down.  I cried too, but didn't let her see.  It broke my heart.  She's stopped being able to say words before, but never to this extent of feeling sad that she couldn't do it.  By the way, she hasn't been able to say that word (or even the 'b' sound) since.

The next morning I called Paige's speech therapist & her pediatrician to see where we can go from here.  Like I said, it might have been the hormones from being pregnant, but I just knew we had to try to do more at this point.  Her speech therapist suggested she might have early signs of childhood apraxia of speech, but they can't test for it until the child is 3 or 4.  Her pediatrician & speech therapist both suggested we go see a neurologist.

Although the neurologist is booked out more than 2 months, they were able to get us in the same week we called because of a cancellation (this has happened before & I can't help but feel like it's meant to be).

I really liked the neurologist & he suggested we do an MRI of her brain & some basic genetic testing if our insurance would cover it.  Her pediatrician suggested that we do an MRI of her uterus & ovaries at the same time, if we have to do one on her brain, so we don't have to wait as long to find answers about that issue.

Up until the night before I was all for the MRI.  For some reason, that Sunday night, as I put her down to go to sleep, I became a mess.  I was getting very anxious & nervous about the whole thing.  I just kept hoping that she would be okay and not scared, I guess.

The morning of, we all woke up before the sun rose... much earlier than any of us have woken up for who knows how long.  I could tell that Paige was confused as we walked out to our car as to why the sun wasn't out yet.  Our appointment was at 6am, so that meant that Rick could come with us until he had to be to work by 8 (he doesn't have paid time off until he's worked there for one year).  I cannot tell you how glad I was to have him there for that first half.  They did the typical things, checked her height, weight, lungs, etc.  They gave her a blanket to take home & they even let her pick out a prize after they poked her for her IV.  Rick held her while they poked her & he told me later that she was signing 'all done' after they poked her, and she made it clear that she was ready to go home at that point.

Paige & I were so glad to have daddy there with us.

I don't know if it was because I was pregnant, the lack of sleep, because she is older, or because of the risk of what they would tell us afterword, but I was still a ball of nerves.  I was more anxious then, than I was with any of her surgeries.  I don't know why, it seems so silly, but I was.  I even began to feel so guilty for wanting her to have the MRI.  I was also nervous that the sedation would have side effects that would delay her even more, like the anesthesia did.

The MRI took much longer than they told me it would, and as I waited I tried to keep busy & wrapped myself in her new blanket that someone took so much time to crochet.  I felt like the blanket comforted me much more than it did Paige.

Paige, of course, did great.  They said it took longer because her cute little body is so tiny & they had a hard time getting a good shot of her pelvis.  When they took me back to her she was super loopy (much more loopy than with the anesthesia... her head was bobbling & all), but happy (much happier than with the anesthesia).  It was so good to see her.  My eyes began to water as I saw her in the tech's (for probably the 10th time that morning), but I quickly pushed it back as I took her into my arms.  She began talking & signing, almost more than normal (in a funny drunk sort of way), so I am taking that as a good sign that the sedation hopefully won't delay her speech.

She slept for most of the day after we got home

She was so loopy the 2 times she did wake up.  It was so cute!
Although, I haven't heard back from her pediatrician, I did get a call from her neurologist.  He said that her MRI is 'not entirely normal', but that it still doesn't look too bad.  I guess in the back part of her brain (where we process info), has less tissue than normal on both sides.  He says because of that we know it's not from an injury, but that it must have just developed that way.  He says he doesn't have a specific diagnosis for this, but we are still on track to doing some general genetic testing to see if that gives us any answers.  He also said that they "think" they saw 2 ovaries, although, they are higher than normal.  So, I think that's good news... :)

Once again we don't have very many answers, but at least we are trying.  I feel like I have to keep 'fighting' for my sweet girl to find answers to the best way we can help her.  I am, so glad, though, for such good doctors & how well Primary Children's Medical Center handles things.

1 comment:

Hall Family said...

Michelle, You are a Good Momma!! This post rang a lot of familiar chords with me. I Hope that all goes well...that answers will be coming in soon! Paige is a darling little girl! I am glad you updated.. Our prayers are with you and your family! Lots of love!