MRI Complete

What a long morning! It started out with waking up to a very sick Gabby. She had a fever and apparently the start of the flu. Since she obviously was in no condition to leave the house, Mike stayed home with her and I left for the hospital at 5:20am. Mike wanted me to cancel the appointment, but it has taken me so long to finally get to this point, I really didn't have the energy to start over. Even though I certainly didn't want to deal with this alone, I knew it was the right thing to do.

Raquel didn't particularly care for being woken up so early and then put in the car, but she really did great! I was surprised at how many families were already there when I arrived, since I had the first appointment, but that was just for checking in and paperwork. Besides having to wait for maybe 20 minutes, the rest of it went very fast.

The MRI department is shared with an adjoining hospital, so once it was Raquel's turn, we were escorted to the MRI area, which was a ten minute walk from where we were playing in the waiting area of Children's Hospital.

They had a bunch of cool toys in there and at one point, when Raquel spotted her snacks in the backpack and got mad because she couldn't have any, I put on her music. Not only did that distract her, it also brought other parents in there to dance with their kids! Although Raquel's situation was much different than the other kids, there was this common bond between the parents. The hugs and well wishes I received from complete strangers was very sincere.

Once we reached the MRI department, we were immediately taken to the anesthesiologist, who could not have been any nicer. I told him that I had reservations about putting her to sleep, and he thoroughly explained the process, and told me all about them using the highest technology imaginable. He also reminded me that they do MRI's all day long and even on newborn babies. He did make me feel a little better.

After our little chat, I layed her down on the table and he put a strawberry scented mask over her face, which she hated, but he already prepared me for that. She slowly started to stop fighting it and he turned her head so I could kiss her cheek one last time. Then he asked me leave so they could start the IV. No pictures - it went really fast and I was in tears. :-(

But after only 35 minutes, he wheeled her out and we were doing the same ten minute walk back to recovery at Children's.

And after another 30 minutes, I was able to see her and help wake her up. She smiled when she first saw me.




After some apple juice and a little popsicle, the smile was gone and she was beyond grumpy. I think she just wanted to leave. That, plus she wanted to consume something more than apple juice and a popsicle - she was starving! But because of the anesthesia, solid food was not recommended for several hours. Try explaining that to a starving 3-year old. She was not pleased.

She fought with the nurses and made it really difficult for them to take her vitals, which they needed to do in order to discharge her. They were somehow able to manage, and she carried on all the way to the car. Once I put her in the carseat, she was all smiles - she realized we were going home.

I'm so glad this is over with. Her neurologist should have the results back early next week and we'll go from there.

MRI Tomorrow

Even though Raquel has been really sick, Children's Hospital is still planning on doing the MRI tomorrow morning. I called yesterday, pretty confident that they wouldn't want to sedate a sick child and that I'd have to reschedule. Not the case. As long as she doesn't develop a fever, vomiting or diarrhea, or any type of asthma condition, they can do the test. And, considering she is doing much better today compared to yesterday, I'm assuming she'll be feeling even better tomorrow morning.

Besides having a swollen and crusty nose, she fell on Sunday in our bedroom and has a cut on it. Then, this morning, she was playing in her room, lost her balance and fell into her dresser, splitting her bottom lip. Not good, but she's a real trooper and is handling it really well. I just don't like having to take her tomorrow looking so beat up. But at least she still has all those curls...



I also spoke with Bev, my Education Consultant, last night. She called to check in and see how things were going. When I told her she was in the orthopedic class, she was a bit concerned and wanted to know exactly what they do with her there. When I told her that she has applied physical education therapy once a week and speech therapy twice a week, she asked me where the occupational & behavior therapists were. I really have no idea, and I'm pretty sure that wasn't the answer Bev wanted to hear, especially considering my biggest concerns were sensory and behavior related. So, Bev will be observing Raquel in class before our IEP Review Meeting so she will be able to address whether or not this is an appropriate placement for Raquel. She is really curious as to what they are doing with her education wise outside of her therapy sessions.

In the meantime, just looking forward to getting through tomorrow. Please pray for a safe test for my girl!

Using Her Words At School

Today, Raquel starting talking to her teachers in class. Of course, being my stubborn three year old, she decided to start out with the non-compliant words - the first one being her pointing her finger at Nurse Janice and yelling, "No way!" when asked to do something. That was then followed by the "don't want to", "you do it", etc. I'm just pleased that they are slowly getting to see her true personality, and they really enjoyed listening to her today. She did simmer down a bit at feeding time and would tell them "more", "eat", "come on", etc. I think by the end of next week, they'll be dealing with a little chatterbox.

I also met with Heather, my new Regional Center person. She is really nice and will be assigned to Raquel's file until age eight. She asked me a bunch of questions and put a few goals in place for Raquel for the year. These goals are:

• Raquel to have her specialized care needs met by a trained respite provider in her parents' absence, through March 31, 2010. (This means that my respite care continues! I was so happy because I was previously told that once she started school, respite ends. Apparently not the case - it just keeps renewing yearly until we get to a point where I don't feel I need to leave her with a trained provider anymore.)
• Raquel to be in the most appropriate educational setting with needed supports and services in place through March 31, 2010. (By now, pretty much everyone in the district is aware of my, let's say, "disappointment" with the transition. I still have Bev as my Educational Consultant who I can consider to be my liasion between them. She has the ability to randomly check on Raquel during class and observe therapy sessions. I can, too, except my visits are supposed to be scheduled in advance. I will be talking to Bev next week).
• Raquel to further develop verbal communication skills to include consistent simple sentences by March 31, 2010. (This was added because I stressed my concern about her not talking at school, but, of course, she started doing so today.)

That's all to report for now. Just glad the week is over and that it ended with, as Nurse Janice said, Raquel having a "fabulous" day in class!

New Class Time Gets Better Results

Last week, Raquel's teacher asked if I'd be open to trying her out in his morning orthopedic class instead of the afternoon one. The afternoon class has been pretty inconvenient for me, my work, and Gabby's school, but also has interfered with Raquel's napping (or lack of, since she was sleeping in class), so I was open to trying out the morning class.

Yesterday was her first day. Although I did receive a call to let me know she was carrying on, they said she was perfectly safe, wasn't distrupting anyone, and could stay until the class ended. They just wanted to let me know what was going on. I chose to go get her, and when I arrived, found her happy and content and enjoying a little snack. As soon as I got off the phone with the nurse, she was redirected by food (that's my girl!), and was able to get her composure back.

Today she had a great day! No episodes whatsoever and she was able to stay the whole time. They are very optimistic that the transition will be very easy - especially considering that today I brought them the secret weapon - the CD. At one point she appeared to get a little aggitated, but once they started the music, she immediately calmed down. And now that she's going to the morning class, there is no more sleeping during class, which is a really great thing. I pick her up, feed her lunch, walk, and then she's ready for her nap and is taking a much longer one, probably because she's tired from school.

Why the orthopedic class since Raquel isn't an ortho kid? Because the orthopedic class is less mobile, and they are able to give Raquel one-on-one attention and work with strengthening her legs and core. For those that don't know Raquel, she is constantly moving and to have her in a class with other kids on the go just meant she was another one that they were chasing around. In the morning class, there are only 3 students, so when they are having their ortho therapy, which doesn't apply to Raqi, instead they are able to put her on the tricycle, do leg exercises, etc. She still does circle time and meal time with them and gets that social interaction. Today when I picked her up, I saw her outside having a ball being pushed around in a wagon with her new "friends".

Raquel's allergist, Dr. Welch, also called today to check in on how she's doing. Since we've noticed big improvements since him putting her on the antibiotic, he feels that she truly had a hidden sinus infection since the 2007 fires and wants her to stay on the medication for a full 20 days. He also wants to see her again in another 4 weeks.

MRI Scheduled

Raquel's MRI will be taking place on Wednesday, March 25th at 7:30am, at Children's Hospital. We need to check in at 6am and are the first appointment of the day. She can't have any solids after midnight, so I'm pleased that we have an early appointment since my girl wakes up wanting to eat! I'm told that the test itself will take approximately one hour. I can be with her until they put her to sleep, then will have to wait outside until it's complete. I'm not crazy about the putting to sleep part, but was told that they will give her a scented mask and it's pretty peaceful. They don't do IV's because they want the children as calm as possible for the test.

I also need to turn in a form to the anesthesiologist, stating that she's been seen by a physician within 30 days of the MRI. I'm hoping that Dr. Mower, Raquel's neurologist, will be able to take care of this since he is the referring physician. If not, I'll have to make an appointment with her primary pediatrician and have her complete it instead.

Allergy Appointment Complete

Today we had Raquel's allergy testing done. What an interesting process it was. For starters, I am convinced that once you start dealing with specialists, you are automatically treated different. No more waiting in the lobby - they expect you to value their time, and don't waste yours either. Quite refreshing.

Here we are just waiting for a few minutes...



It started out with Dr. Welch asking us a bunch of questions and then giving Raquel an exam. She was very cooperative - especially considering this was all taking place during her nap time and she was obviously tired. Dr. Welch soon thought that Raquel has been dealing with what is called a "hidden" sinus infection. Once we told him about her developing croup, a sinus infection & ear infection after the October 2007 fires, he seemed to think that she wasn't given a strong enough antibiotic or that it wasn't given to her for a long enough duration. He said that hidden sinus infections are only detectable by x-ray or CAT scan, but that her symptoms definitely were showing that this was going on. He also said they are very painful, which explains why she is constantly pushing on her nose. I thought it was because she was itching it, but he said "pushing", which he observed today, is something different.

After his evaluation, he ordered up some tests that the nurse came in to administer. She even tried them out on all of us before doing it so we would know how it was feeling to Raquel - although she didn't push nearly as hard on us as she did Raqi. I don't know if I would call it a scratch like sensation, more of just a weird prick - kind of if you took a bristle hair brush to your arm and pushed down a bit hard. But, of course, there were not nearly that many bristles.

Here how the testers looked...



To apply them, Mike had to hold her in a big hug, and I had to first put those curly locks up in a high ponytail so the hair wouldn't mess with the test, and then hold her arms across Mike's shoulders so she couldn't fidget too much. She did really great when the nurse applied them. Her eyes got real big a couple of times but she never cried once. Then the real challenge came: we had to keep her hands away from the test areas for 15 minutes - and we were told that the stuff was going to start really itching. Mike did great - took her outside and did the best to distract her. One smear and we were done and would have to come back to have her re-tested at another time. Obviously, not what I wanted to hear or have to do.

This was taken right after the test was administered and bumps were just starting to form. Can't see much - but check out the chub. She's REALLY growing! :-)

Once her successful 15 minutes was up, the nurse came back in to check and measure her skin reactions.

And then she rubbed her back down with some anti-itching cream to soothe the areas.

Then Dr. Welch came in to go over the results. It's a great thing we had this done - turns out that Raquel has a SEVERE allergic reaction to not only cashews but also peanuts! She'll need to have an EpiPen (shot device) with her at all times to prevent her from going into sudden analphylactic shock if she digests them. So not good, but atleast we know. She also tested negative to not only environmental allergens, but also wheat and dairy, so she technically doesn't need to be on the gfcf diet anymore. He did say to gradually introduce the foods if we decide to take her off of it so we can see how they are affecting her. We see Dr. Welch again in another 4 weeks.

I'm just really happy that all the tests are done for now and that we are fortunate to have some answers. I'm still waiting for the MRI & EEG appointment dates, so until then, I'm hoping for some much needed calmness in the house.