Grace Update

Well, today was definitely a fun day! We went to a water park today and got to play with Daddy, because he got off work today :) Grace had a genetics test today, and so he decided to stay out of work and just spend time with Grace and mommy. So we went to the great grandparents house, and then home to go to the water park. She didn't do a lot of laughing, but there was the nervous laughter that we heard every so often! And we got an awesome picture of her teeth that are coming in on her bottom gums.

We should hear back from the genetics test in three weeks, and I'm really hoping there are no abnormalities. If there are, that could mean that she could have delays later in her life, but if there is no abnormality, that could mean she won't have any issues. So the three weeks are going to be hard to wait for. If there are abnormalities, they will be testing Brad and I next, and we might be contacting the University of Chicago because they have done extensive research on Microcephaly. They have some pretty good tests that they could run. Granted, it will cost $4000, but hopefully it will be seen as necessary so insurance will cover it.

So that's where we are. She's 17 1/2 pounds, 27 inches long, and her head is 16.25 inches around. She's delayed to a 6-7 month developmental level, but her social skills are beyond average, especially seeing that she has Microcephaly.

MRI and doctor's visit updates

Well, we got the results back from the MRI as well as some new news from her pediatrician. The MRI showed that there is more fluid in her spine than there was in the beginning, but that the tethered cord is gone. So, about the fluid in the spine. In the beginning we learned that the fluid in the spine was caused because the tethered cord was pulling her spine, and it was somehow allowing the fluid into the spine. So the hope was that with the surgery, the fluid would go away. But actually, it increased, which means there is another problem. So what the doctors want to do is do another MRI in 3 months, and if the fluid is the same amount, this will be her new "normal" level and there won't be a worry about it. But if the fluid has increased yet again, then there will be other tests done, and most likely surgery. Ug...I am so tired of these MRI's. I mean, I know they are doing good because they are showing us problems in her body, but they are really hurting her too because they are delaying her more. Every time she goes under there is a certain amount of delay; the doctors can't say for certain how much, but they do know there is an amount of delay. Here is the information that we got from her 9 month checkup...

Her height is 2'3.2", and it was 2'1" in January, so she's gained all of 2 inches and is in the 32%. Weight is 16 lb 7.7 oz, last month it was 15 lb 7.6 oz, so she's gained all of 1 pound (9%). And her head is 16.1", and it was 15.51" in March, so she's gained all of .6" and is in the .37%. It's really hard not to be upset about this because she's so small...it's hard not to feel like it's my fault. Like, if I would have eaten more, than maybe she would have more weight on her. Or if I would have done something to take better care of myself, then she wouldn't be so bad off. How does a mother not blame herself when she sees her child struggling, and the child did nothing to cause that struggle. This is all really tough to handle...

MRI Results to come, as well as Genetic Testing

So we got a call from a receptionist in Oakland saying that the MRI results are in, but we can't hear the results until the 22nd because that's when the doctor is back from her vacation. Really?? NO ONE else can tell us what the MRI says?? She has a partner that she usually works with, so we are checking to see if we can do a phone conference with him so that we don't have to drive all the way down to Oakland. And I don't really want to drive down there by myself with Grace. Also, Grace will be having her 9 month checkup on Monday, and after that meeting we will be setting up a genetic test to see if her Microcephaly is genetic or if there was a problem that happened with her own genes. This would be good to know seeing as I would like her to have a little brother or sister. Everything always has to wait so long...ug...I hate having to wait.

Tortilla Time!!

Grace ate tortillas and shredded cheese for lunch today! It was so cute to watch her gum the tortillas. She didn't eat too much so of course I had to give her baby food instead, but that's ok. At least she's trying to eat something other than baby food! It was cute because I leaned over to her and opened my mouth, and she swung her arm over with a big piece of tortilla and was aimed for my mouth, but of course it didn't make it! She's doing so well with her eating. She doesn't really try to gum the food she eats all the time, so of course she gags, but she is learning. And as soon as those teeth come in, she will be able to tear apart more food :)

Park Time

It was a beautiful day, so we decided to take Grace to the park (06/06/10). It was pretty fun! Even though it was really windy, Grace was still really happy to be out in the nice weather. Her physical therapist said swings are great for Grace to be in because they make her sit upright, and since she loves swings, we headed right for the swings! This time, she didn't laugh as much, but that's because she was tired and had missed a nap! Mommy was freezing though, so we didn't last long!

Visit with Dado and Papa

Last night we surprised the great grandparents with a visit on our way back home from Super Walmart. They were so excited to get to see little Grace! Papa, as always, made us chocolate milkshakes, and while we ate them, he laid on the floor with Grace and talked to her. It was so sweet to see him down there with her. He has numerous medical conditions that make it difficult for him to walk, and at times it's painful, but he got right down there on the floor without a second thought. It seemed as though they were having their own little conversation; one talking and then the other. At times she would roll over and he would say, "Uh Oh! She's losin' ground! Yeah, she's fine. She will be crawling in no time." I love watching the great grandparents get so much excitement out of Grace. Dado just loves to see Grace's face light up with a smile, and just gets so tickled when Grace smiles a huge smile right at her! I love hearing my grandma laugh at Grace. The visit was really nice, and I know that it made them happy. When we finally had to leave because Grace was getting fussy (seeing as it was 10:15 pm and past her bedtime) they walked us out to the truck and made sure to say "I love you's." I loved hearing papa say, "make sure you come over again soon!" And to watch him kiss Grace is so sweet. He is vision impaired, and usually has to be within inches of something to see it. But he knew exactly where her cheek was, and it was especially nice because Grace sat perfectly still in his arms while he slowly leaned forward and kissed her! I love them so much!! Next week we will be going out to lunch, just Dado and Papa with the granddaughter (me) and great granddaughter (Grace)!

Upcoming Birthday!!

The biggest birthday on the planet is about to arrive!!! Grace's 1st Birthday!!! I am so excited! Mom and Dad bought a rainbow shirt for Grace, and got some gold shoes from Payless to match with the shirt. We are going to be celebrating her birthday up in Montana, so we are going to get her invitations out early. Also, we already bought birthday decorations! There isn't much because there isn't much room in the truck, but there's plates, napkins, cups, tablecloth, and a hanging sign. And they all say "Happy 1st Birthday!" I already practiced making Grace's birthday cake, which is a 6 layer rainbow cake, and even though it took me two hours to make, I am still going to make it for her!! She absolutely deserves it!!

Physical Therapy Good news!

On May 20th we found out Grace doesn't have to go back to see Amanda for a month! What wonderful news little Gracie! She (Amanda) was happy to see how much progress Grace had made, gave me a few pointers, and then sent us on our way. I am relieved to see that she (Grace) is getting so strong so fast.

Big Blue Beautiful Eyes

On May 19th I took Grace to Roseville because I was worried about her eyes. Her right eye wasn't dilating in the dark, and her left eye was always turning in. So after meeting with the eye specialist, he let me know her right eye isn't dilating because neurologically, the message isn't being sent to her pupil to dilate. He says this won't cause any problem with her vision...hm...if your pupil not dilating won't be a problem, then why do they dilate at all??? Anyways...the left eye is diagnosed as Amblyopia, which is the turning in of the eye, and that is caused by Esotropia, which is when the brain doesn't register that the left eye is there, and so it stops using it. Come on Brain?!! There is a big beautiful blue eye there just waiting to be used!! So we have been patching her right eye so we can help the brain "see" that her left eye is there, and so the left eye can get strengthened. Then, there will be surgery on the left eye to straighten in out...sheesh. All these big technical things for such a little one. But she is such a trooper. She doesn't even fuss when the patch is put on or taken off, and she does wonderfully adjusting to just one eye being used. I can't believe it. Through everything she's been through, she's been really strong, and hasn't put up too much of a fuss. I mean, with the surgery she would fuss if we moved her too much, but that's just from the pain, and ever that surgery was minimal. This little child is definitely teaching me about patience!

Physical Therapy Begins!!

On May 6th we went to visit the Physical therapist, who has the same name as mommy!! It was a really good to finally have someone evaluate where Grace is at with her physical capabilities, and after Amanda worked with her for a while, she told me Grace was at a 4-5 month physical development. Just a couple of days before Grace and I had gone to see Amanda, Grace had started sitting up out of the blue. (Not well though, but at least putting an effort in!) Grace at this point was 8 months old, so being THIS far behind wasn't a very good thing. But Amanda gave me a lot of good exercises to do with Grace using an exercise ball, so I was excited to get started working with her .

Problems going Potty...

Grace had some problems going potty before we checked out of the hospital, which is why we were there for so long. They had to give her a catheter every 3 hours, and she also hadn't had a bowel movement. So she was taking laxatives and prune juice, and mommy and daddy had to learn how to give her a catheter as a requirement to going home. Finally, mom argued enough with the nurses to let us go home, and so they called the doctor, who said "I don't know what you're still doing here! Yes, you can go home!" We had to give her a catheter every 3 hours for awhile, and finally were able to stop 10 days after getting home! That was a major relief, because it took a lot out of us, and her, to have to stop what we were doing to cath her. She was still having constant problems with constipation, but nothing a little prune juice couldn't help!

Grace's Tethered Cord Surgery

We had to go to Oakland for Grace's surgery, and we were there for a total of one week. It was pretty hard to let Grace go to her surgery, but I had to trust that the doctors knew what they were doing, which they did. They called us throughout the surgery to let us know that everything went well, and it was a surgery totaling 6 hours. The doctors let us know that when they cute the tether, the spine spring back into place, and so it's obvious Grace needed the surgery! They were glad they did the surgery this young, when Grace was only 7 months. She recovered well, and even though she swelled up in the hospital because of the IV, she lost all that swelling pretty quick. She is such a trooper, and all the nurses just loved working with her. The stitches totaled 25, but it was really just a continuous stitch with 3 single stitches to close up the small openings left over. Upon returning home, she healed really well, and was back to herself in no time. After the two weeks, we returned to Oakland to get the stitches out, and then in about 3 more weeks, the wound was completely healed!