Updates

So I am very behind on blogging. Things have been crazy here. Here is our latest updates. For those of you who know, the Doctors found a tissue based nodule in my thyroid and were concerned that it was cancer, so that has been a big worry for us. However, we just got the test results back and it is benign, so that is great news. Isabelle continues being very busy going to the Physical Therapist and has a cardiologist apt. today. They will be doing an Echo Heart Gram, so we should have an idea of whether or not her heart is starting to heal on its own. Next month is her next neurologist apt. The other challenge we have been facing is that Isaac lost his job 2 weeks ago. We've been looking for work and trying to get our insurance figured out, which has been my greatest worry with all of this. We're praying to get quickly approved for Ahcccs insurance until we find a new job and we could use every one's prayers for this, because this government agency is the most disorganized, inefficient place I have ever been to and despite Isabelle's medical problems, they won't fast track our application. University of Phoenix, Isaac's previous employer, has also been a huge pain and hasn't been filling out the paperwork necessary for our application or filling it out incorrectly. I am pretty sure by the end of this year my hair will be completely gray. Anyway, our insurance is up at the end of the month, and we are hoping for a miracle and to be approved for Ahcccs by that point. If not, we will apply for Cobra, however it is insanely expensive, so we are hoping to not have to resort to that.

Another highlight in our lives lately was a visit from my sister. It was Dodi's first visit to AZ. and it was great timing. She watched the kids while we applied for jobs, and ran around trying to get insurance taken care of. She also did a great job cheering us up. She got Isaac out running with her everyday (which he has still been doing since she left, and I'm so proud of him), took Eli swimming (no one else in AZ. will brave the pools yet, because it is only high 80's - not warm enough for us!) and on lots of bike rides and got me out of the house to all sorts of places. We had a blast and I tried very hard to get her to stay longer, but failed.

So that is what is going on with us. Thanks for everyone for your emails, phone calls and prayers. We appreciate it more than you know. I'll post pictures soon, we've got a ton of new ones.

Our Crazy Week

This week has been another long one. Today Isabelle had a great apt. with the cardiologist. She gained weight (woohoo - 9.3 lbs!), and all her tests looked good, so we don't have to go back for another month. Then they will do an Echo HeartGram and we should get an idea of whether or not her heart is starting to heal on its own.

We've had multiple physical therapy apts. this week keeping us busy. With everything going on, she isn't quite hitting the developmental markers that she should. She isn't really able to hold up her head and is still pretty limp and floppy. Her PT therapists have me doing exercises with her everyday, trying to wake up and strengthen her muscles. Because of her seizures, she actually qualifies for a state-run program that pays for the PT to actually come to our house, which will be really nice. We usually have between 3-4 apts. a week, so it will be nice to have someone come to us.

The big surprise for us was a phone call by Isabelle's neurologist. She was reviewing all of the different things going on and thinks that Isabelle may have a genetic disorder called DiGeorge Syndrome. So, starting next week we will be doing different tests to see if she does. We'll have to do some blood tests and go see a geneticist. We are praying that she doesn't have it. It could lead to a lot of other problems.

Here are some of my favorite pictures from the last few weeks.

Isabelle and Eli's Pictures

We had Isabelle's baby pictures taken two weeks ago and a few of Eli and her together and just Eli. Here they are, I thought they turned out great. Isabelle is 6 weeks old and Eli is 2 1/2 in the pictures.

This week has probably been one of the crazier weeks we've had since we brought Isabelle home. On Tuesday we took Isabelle in for an EEG. That was no fun - we had to bring her in sleep deprived, so I had to keep her awake from about 6 AM until the test at 2, which doesn't sound hard, but for a 6 week old, is really hard. When we got there they rubbed this salty, gritty stuff on her head and put electrodes all over her head. There were about 20 taped onto her head and then they wrapped her entire head in gauze to keep them on. It was so sad to look at her with her head all wrapped and tons of wires coming out of her head. I held her while she slept for a half an hour and they recorded her brain activity and then they put a strobe light in front of her and recorded her brain activity. All in all, it took about 2 hours. We had been to her neurologist the week before and she has been doing well and so the neurologist expected that the EEG would be normal. She called me the next day and said that the EEG was still showing abnormal spikes in her frontal lobe and that Isaac and I needed to bring her in for an consultation immediately. We went in Friday and discussed her options. They are starting her on an anti-convulsant medication to stop seizures, although we're not sure she's been having them. They are really hard to identify in an infant - stiffening of the arms, eyes stuck in one spot, spontaneous laughing (yup, infants shouldn't start laughing before 2 months and giggling is a form of seizure in infants younger than that. When Ellie was a week old and in the hospital, Isaac and my Aunt Kate heard her laugh. I thought they were making it up, but the Doctor said that that was probably a seizure). The Doctor wants us to try and video record when we see her do any unusual behavior or anything we're not sure of, so she can evaluate it. In 3 months we are going to do another EEG on her and an MRI (they want to wait until she weighs more and is older) to see if we can figure out what is going on. They may possibly put her back into the hospital then too for 24 hour video monitoring, to see if they can record a seizure. So for now we don't really know too much, but we're going to keep her on the medication and in 3 months do more tests to see where we are at. At this point, she is getting different medications 11 times throughout the day. I have to keep them all written out and the times she gets them written out because I can't keep them all straight.

Good news is we had a good apt. with the cardiologist and she is gaining weight. She finally hit 8 pounds this week, which is great. It only took 7 weeks! She is great at home and next week we have fewer Doctor apts. than normal, so I am happy she can have a week with less poking and prodding than normal.

I'll keep updating the blog to let you know more as we know more.

Our lives have been so crazy lately with all of Isabelle's doctor visits and just trying to get used to life with new two kids. I feel like I have nothing to write except medical updates! However, here is what's going on with Isabelle. We went to the doctor this week and she is still gaining weight and is at 7.8 pounds! That is still so small for being 6 weeks old, but we are so excited that she finally passed out of 6 pounds. She goes in this week for an EEG and they will be looking for more abnormalities that show seizure activity. If this EEG is normal than the neurologist said that she probably will not continue to have any more seizures and that the seizures were probably due to all the problems that occurred at her birth. If the results are abnormal again, then they will do an MRI to try and discover what is causing the problems. We're praying that the results will be normal and we can cross one Doctor off our list.

Last week was great because Isaac's sister Amy was in town with her twins, Ava and Maze, who are Eli's age. Eli spent most of the week over at his Grandma's house, playing with his cousins and running around like crazy. It made me realize how boring I must seem to him, compared to kids his age. They went to the train park together, which is Eli's absolute favorite park ever.

Ava, Maze and Eli