I can't believe how fast these months have flown by... and how big our girls are getting!! We almost have a 2 year old and 4 year old!! Now that's crazy!!
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| Dressed to impress!! My little doll... |
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| Riding in style! |
Mia's 3 hour appointment to Lucile Packard Children's Hospital turned into an outing of almost 6 hours from pick up to drop off, and borderline useless. Out of all the specialists we saw, the one who might have any sort of anything to go on is the Geneticist. He was the first who had the thought of Pontocerebellar Hypoplasia, so we researched it (we meaning Robert) and several months later, suggested to the Neurologist that it may be what Mia has. She agreed that it looked very similar and decided to go ahead and diagnose her with it for the time being.
I mentioned all this to the Geneticist, so he says he'll be emailing Mia's most recent MRI to a group who specializes in only Pontocerebellar Hypoplasia, and they'll be able to see whether or not she has it. If it looks like she does, then they'll do blood work (it can now be found via blood) to confirm. I'm going to be calling the Geneticist team this week to see if they've sent the MRI yet.
The main specialist that should have provided the most help was the Oral Surgeon. She was obviously not thinking clearly. From the last blog I mentioned Mia's mouth being very tight and there not being a whole lot of jaw movement. We showed this doctor Mia's limited jaw movement and she asked if Mia's eating anything by mouth. We told her no, because she can't open her mouth and that she gets everything through the g-tube. Her wonderful professional opinion was that once Mia is less dependent on the g-tube, then we can think about doing something with her mouth. I repeated what she said. Jay (the RT who went with us) repeated what she said. Robert repeated what she said, all making sure we understood her correctly and if that's really what we heard. To all of us, she said, yes. We're thinking, "Are you CRAZY?!" How in the WORLD is Mia supposed to be less dependent on the g-tube if she can't open her mouth to eat?? Yeah, we were less than happy. Oh, another thing this fine doctor said was that she wouldn't do any kind of surgery until Mia is full grown - around 16 or 17 YEARS old.
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| Blue lips!! =) |
I came back to CRC and gave this insane recommendation to the Occupational Therapist that works with Mia on oral stimulation and taste tests, etc and she, too, thought it was crazy. But, all it did was push us to do what we can to help Mia. So, the next day (on my birthday!), Mia had some applesauce and LOVED it! She was so calm and content with no fighting of any kind. It was so cute to see!! They put blue dye in it so if Mia aspirated, blue would come out when suctioning the trach. If she actually swallowed it, it should show blue when checking the g-tube. Mia only had 1/2 a teaspoon of applesauce through an eye dropper and it never came out from the trach! It also never ended up all the way to her stomach, so it probably just wasn't enough to go that far, but either way, we were so happy! That was a happy birthday to me!!
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Mommy's birthday
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| In a few seconds, she'll start screaming and kicking. |
Mercedes had her root canals done last Tuesday and I'll tell you what... having your child on your lap while the Anesthesiologist is putting her under? Not enjoyable. He walked us through with how Mercedes was going to act while getting knocked out and she did everything as expected, which is VERY hard on a Mom. =) Another thing that was very hard to see was Mercedes on a pulse/ox monitor. Obviously it's not unusual to see it, since I'm around it everyday, for the past almost 2 years with Mia, but seeing Mercedes on it? I knew she was fine, but knowing that both of my daughters were on it was hard. Mercedes came out of the procedure great, though her bursts of screaming and crying and kicking was about every other minute, then she'd be asleep again. Thankfully that only lasted during the car ride. Once we were home, I gave her her promised surprise and she was very happy to receive her very first Little Einstein's DVD. She watched that on my bed while having a popsicle until she was fully recovered. It took her 3 days to finally look at her new silver-capped molars, then while brushing her teeth and making silly faces in the mirror to see them, she proudly said, "I wuv my new siwver teef!!" And she truly does! She loves putting her fingers in her mouth to stretch her lips to show off her silver teeth! haha
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| She's loving Cubbies! |
Mercedes and I have been definitely keeping busy. She's now doing AWANA Cubbies at a near-by church along with her cousins and is loving it!! She got her book, vest and bag last Sunday and is so proud of them!
She loves doing her Preschool (meets every Tuesday morning) homework as well, and starting tomorrow, we'll be starting our homeschooling. That's definitely been keeping me very busy - and it hasn't even started yet!! It'll be fun - I'm pretty nervous, but I know once I get started, I'll love it and I'm sure Mercedes won't notice if I make a mistake here or there. She's so ready and willing to learn. It's wonderful. =)
Robert, Mercedes and I have been pretty consistent with waking up and going for a 4 mile walk in the mornings before he goes to work. We've gone for walks in the evenings, but I definitely prefer seeing the sunrise instead of it being totally dark when we come back.
With us being sick for the past few days, we hadn't gone for walks, but we definitely made up for it yesterday! We did an 8 mile walk yesterday morning to Vasona/Oak Meadow parks. It was a really nice walk! I woke up a little stiffer than usual today, but ... haha Mercedes had a great time since this time she was actually able to get out of the stroller and play on the Air Force jet they have there and go down the slides and swing. She's finally figuring out how to swing!! She's doing a great job!
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| Oak Meadow Park!! |
You can keep us in prayer. A family that we're close to just found out that their kids were positive for Whooping Cough. After seeing them, we'd noticed that Mercedes seemed to be getting the sniffles, then it got a little stronger, and now it's a pretty strong and bad cough. As soon as I got the call that her kids are sick, I immediately called Mercedes doctor to see if she could be seen asap. They asked for her last name and when I said Adamis, the gal gasped and said "Oh, is she home now?!?" I told her no, but it's her big sister who's sick, so they got Mercedes an appointment an hour later since they don't want to risk getting Mia sick.
Nasal swabbing was no walk in the park for Mercedes. It took the nurse, myself and my Mom to hold Mercedes down. They got the two swabs they needed and if it comes back positive for Whooping Cough, we'll find out today. Either way, we'll hear from the doctor tomorrow. If it is positive we need to let CRC know right away so they can test Mia and put her in isolation. Mercedes' doctor isn't taking any chances, so she already put Mercedes on the medicine to treat Whooping Cough because she's worried about Mia. I love this doctor! Kimberly Pitts-Davis, for those of you in the SJ area!!
Right now, Mia is pretty sick. They've had to increase her breath rate from 14 to 22 to keep her c02 down, and she's requiring more oxygen to keep her sats up. She's super junky and we're just hoping it's only a cold that Robert and I had earlier this week and nothing more. Jay changed some orders so she's getting an extra breathing treatment to loosen secretions and they're doing it via IPV instead of the regular nebulizer treatments.
Robert is enjoying his new job and his boss and coworkers. We're very grateful that he was able to get this transfer. It's definitely what we all needed. Right now he's working the Salinas Air Show, kind of at the last minute because they needed someone. It kind of worked out anyway, since Mercedes and I are skipping church, Cubbies and 2 extended family functions today since we don't know if she's positive or negative.
Keep us in prayer!
Blessed,
Rachael
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| This pic is too cute not to post! She's getting physical therapy with Karen. =) |
