Small Development

Isabel New Year's Eve
(that is just sparkling apple juice)

Well I am a slacker what can I say. I have been very busy and have not been blogging. Isabel is doing well, but I thought I would post an update. Since the last post she had another x-ray of her spine and her scoliosis has not changed. Which is good and bad, I guess. She will get another x-ray this fall to continue to monitor it.

Several months ago she kept telling me her feet hurt. I know it was probably nothing, but it made me nervous. One of the symptoms of a syrinx is numbness in the hands and feet. So I decide to talk to the Neurosurgeon and seen if this would warrent another MRI. And he agreed. She didn't even get sedation this time. She stayed perfectly still during the 45 minute test. I was very impressed. Well the syrinx was smaller, but she had a lot of enlarged lymph nodes in her neck. She has been telling me she feels like she has a "bubble in her throat" on and off for a while. I didn't think too much about this. But the report from the MRI said they could not rule out the possibility of cancer. Yes you heard me right cancer. So off to another doctor we go. We went to see an ENT (ear, nose and throat). He said her tonsils were big and needed to come out. He thinks her lymph nodes are enlarged because of her swollen tonsils. So after school gets out my plans is to have them removed and then they will recheck the lymph nodes to see what happens. I also need my tonsils out. So Ben and my mom have agreed to help and me and Isabel are going to have a mother-daughter tonsilectomy. Doens't that sound fun?!?

GOOD NEWS: BETTER LATE THAN NEVER

Well it has been about a month since we went to see the orthopedic doctor for a 6 month follow-up x-ray of Isabel's spine. Most of you have probably heard the news, but I still thought it needed to be posted.

Before her appointment Ben and I took bets on what kind of progress we thought we would see in her spine. We both thought there would be improvement of about 10%. Boy were we wrong. I knew it had improved, I could tell by way her shirts were fitting. With her shoulders being different heights, it made the neckline of her shirts hang funny. Anyway....

Her curve went from a 37% curvature down to 18%. And the even better news is that the doctor said it may improve even more. We will check her again in another 6 months. I can't tell you what a roller coaster this whole experience has been. It was a difficult decision to send a seemingly normal child in for brain surgery. But in the end everything has turned out better than I imagined.

(a fun picture of Isabel getting her toe nails painted)

Scar...what scar?

Look at how well she is healing. With her hair, even if it is pulled up, you can hardly see it.

Great News

Isabel had an MRI on Thursday. It was at very interesting to see the progress she has made. She told me that she had already had an IV and so she was going to be very brave. She only fussed for a second when the needle was going in, other than that it was smooth sailing. I guess she is a pro now (sad to say). Well we had an appointment with the neurosurgeon immediately after the MRI. I love technology. He was able to pull up the images from her scan and give us her results. He said we could not have asked for better news. The syrinx (the large cyst in her neck that was compressing her spinal cord) is 95% gone. He said we could not have asked for better results. He said it will never completely go away.

We were thrilled. I had a feeling that we would get good news. It is amazing how quickly she has recovered. She complains a lot about tummy aches. Well I think a lot would actually be an understatement. We are going to see the pediatrician and I am going to go to the health food store and get some ginger. At times I think she is playing me, but other times I think they are real. It is probably a combination of both. Does anyone have any suggestions on how to deal with constant tummy aches? I would love any ideas.

We see the orthopedic doctor in a couple of weeks to see how her scoliosis is doing. I hope we have the same kind of results at that appointment. I took some pictures of her scar. I will post them soon. It is healing nicely.

Scarletina??

Well Isabel has been having some skin issues. She has always had mild eczema. You know some red itchy spots mainly in the creases of her elbows. About two weeks ago her eczema EXPLODED!!! This is the best way for me to describe it. She was covered with red blotchy scaly yuckiness. We went to the dermatologist and they gave us some steroid cream. This started to clear it up and just when it was almost gone she was covered with another type of rash. Fine little red pumps all over her body. Her skin was red and very itchy. This started on Wednesday. I thought maybe she was having a reaction to the steroid cream. I read the insert that came with it and it said that children can have intercranial hypertension with the use of steroid cream, so I stopped using that. We have enough brain issues to worry about, I didn't want to think about adding another problem. I thought it might be a reaction to my parents dog, Woody. So I gave her benadryl. Still no help. We finally went to the after hours clinic on Sunday night after I had exhausted all possible home remedies.
I couldn't believe it she had step throat with a scarletina rash. This is something related to scarlet fever. But she never had a fever or even complained of a sore throat. Leave it to Isabel to have all the odd symptoms to all sorts of odd illnesses.
Tonight before bed I put the usual coat of greasy lotion all over her sandpaper skin. She just cried and cried "I HATE FEELING GREASY, NO MORE GREASY LOTION!"

DOES ANYBODY HAVE ANY HELPFUL HINTS RELATED TO SENSITIVE SKIN ISSUES AND ECZEMA? I WOULD LOVE ANY INPUT YOU MIGHT HAVE. ISABEL WOULD ALSO APPRECIATE ANY ADVICE THAT DID NOT INCLUDE GREASY LOTION!!!

Post-op doctor's appointment

We had an appointment with Dr. Brockmeyer, the neurosurgeon. He said she is doing great. She will get another MRI in March to see if the surgey helped her syrinx. He told us they usually improve 80% of the time. We are hoping, praying and even crossing our fingers that it improves. If it doesn't it will probably mean she will have to have another surgery. But like I said we are very hopeful. We will also follow up with the orthopedic doctor to see what her scoloiosis is doing. We will do that in April. So far all is well and she is doing great!

Back to school

Isabel went back to school on Monday. She was out for a whole month. She came home early one day. I think it just wore her out. But I think she is glad to be back. It makes me nervous because I cannot watch her all the time now. Even though the doctor said she isn't fragile. I can't help but worry (after all she is missing a piece of her skull, a portion of her brain, and part of her first cervical vertebrae). I worry about her falling and injuring herself. As a parent I have always been a worrier. I often remind myself to take a deep breath and relax!! We see the neurosurgeon next week, I am sure he will reassure me.

Healing

Isabel is doing great. Her stitches came out last tuesday and the incision is healing up quickly. She complains about headaches now and again, but most of the problem has been with the muscles in her neck. Lack of moving her head has given her some painful muscle spasms. She gets worn out easy too. We had a busy day yesterday with a family christmas party and then a trip to Build A Bear Workshop. It was fun, but she was pooped and got a headache by the end of the day. I hope she will get back to normal soon. To make up for the busy day yesterday we had an inside day today. We didn't go anywhere and we didn't even get out of our pj's. She watched movies most of the day.
I have kept her hair in pigtails or her favorite, a side pony tail, to help keep her incision clean. I tried doing a low pony tail when we went our yesterday to cover it up, but she said it made it itch. I hope she will let me cover it before she goes back to school. I wonder what her reaction would be to other kids seeing it. She doesn't mind if people look at it now. But it may be different with a group of 6 year old kids and their reactions and comments. She will go back to school after the holiday break. I hope by then her incision will be completely healed.

Day 4....Coming Home

She's coming home

Isabel with the Jazz

(One of our favorite nurses)

We are so glad to be going home. It was difficult to be away from Sophie and Kya. Isabel keeps getting a little bit better everyday. Primary Children's Hospital is amazing. We are so lucky to have such a great children's hospital so close. The staff is amazing. They were great with Isabel. One day the High Patrol came and delivered a teddy bear to each kid in the hospital. Kya was there when they came and they gave her a pencil, stickers, and a toy car. Isabel also got to meet some Jazz players and Jazz dancers. They came by and gave her an autographed basketball.

Day 3

I am very tired and very exhausted. Ben is staying at the hospital tonight and I came home to see the girls. Isabel did very good today. The doctor said there would be a couple of rough days and then she would turn a corner and the recovery would be very quick from that point. I hope we are starting that turn. Here are a couple of pictures.

She asked if they could shave her head in the shape of a heart. I guess the marker drawn heart is the closest she got.

Pre-surgery with her puppy that went to surgery with her

Pre-surgery (Obviously-look at that smile)

Day 2

Well for most of the day Isabel did amazing. The doctor's said she was the star patient. She played bingo in her room, colored and watched TV and movies. And had a few visitors. But I think it all wore her out. In the evening she threw up and kept throwing up through the night. They say all this is normal and probable related to a low pressure headache. This happens beacuse she is low on spinal fluid because it leaks out during surgery. She seems to feel better this morning. They also took her IV out last night, before she got sick, thinking she was doing so well she could go home today. But after last night I think we will be here a little while longer. I will tell you I miss my other girls (and my bed) a lot.

Day 1.......Surgery

Well I am glad the surgery is over. The neurosurgeon said the operation could not have gone better. Everyone at the hospital has been amazing. They have Child Life Specialists that are amazing with the kids. They taught her pre-surgery call we attended and the same girl, Emily, was also here with Isabel before her surgery. She gave her a hospital buddy(a small doll that she got to draw a face on) and let her play games, make a necklace and play with real doctor things (things she would see in the operating room, masks, blood pressure cuffs, etc.) She also accompanied Isabel to the OR with polly pockets and I Spy books to keep her comfortable until she went to sleep. Isabel was SO brave when she had to tell us good-bye before her surgery. I could tell she was scared and holding back tears, I am amazed at her strength. I on the other had fell to pieces as soon as she left my sight. It was a long 2 1/2 hours.

I was prepared for the worst after surgery. I thought she would look very sick, but she looked great. Once she woke up I was surprised at how well she was tolerating everything. She did get nauseated and threw up once. She can order her food like room service and also has an endless supply of slushies. Dinner consisted of ftuit loops and chicken nuggets. She keeps the nurses busy and entertained. Last night she told the nurse on the night shift has pretty she was. I think that got her a little extra attention.

We did not sleep much last night. I think her neck was getting stiff and there are a lot of unfamiliar hospital noises. But again I am amazed at how well she is tolerating and dealing with all of this. She must get her strength from her dad. We tell her that we love her and how brave she is and her reply is "thank you". She acts so grown up.

I am sorry if this post is random, and lacking in details, but I have not had much sleep and I am anxious to get back to Isabel. I will try to post again soon.

I think Isabel may want some visitors soon. If you do want to visit give Ben or I a call to see how she is doing. Thanks again for all your love and support. And I want to tell my sisters and sister inlaws, and mother in law thanks for helping with my other girls. I appreciate it.

SURGERY UPDATE!!!!

This is Tiffany (Heather's sister) filling in for Heather since she is "pre-occupied" at the moment. Isabel went into surgery this morning at 10AM and the surgery lasted about 2 hours. Before Isabel went into surgery, she asked the nurses if they could make a heart shape when they shaved the spot on her head! Heather will have to let us know if they did indeed do that!!!!! Once the nuerosurgeon got inside, he said things were a lot more compressed than he had originally thought ( I will let Heather go into more details about this since I don't know a lot about it).

She is doing pretty good. She has been pretty nauseated and they are managing her pain with medication. Heather just turned Wall E on for her and we hope she gets better fast.

I know Heather and Ben (as well as all of us) really appreciate all of you thinking about them & keeping them in your prayers at this difficult time.

Heather was hoping to be able to get on the computer either tonight or tomorrow and give you a better update!!!!!

P.S. My dad sent that picture to me on his phone after the surgery and I must say...she looks pretty sweet!!

Back on schedule

I got a phone call from the hospital and her surgery is going to be on tuesday. She is actually excited. I don't think she knows what she is in for. She is counting the days. She may rethink the excitement when she has to go in on monday and have blood taken :(

WHAT????????

I just got a phone call from the hospital this morning. Isabel's surgery has been bumped. The doctor had a couple of emergencies arise and so we will be rescheduled. The nurse said we would find out on monday. And the surgery will probably be on wednesday or friday. I have spent alot of time arranged sleepovers for Sophie and Kya. Now I will have to do it all over again and on pretty short notice. The nurse said she is hopeful for wednesday. Now I just hope my work will be willing to work with me. I do have a great supervisor (he is understanding about family issues) and let's face it. This is just out of my control.

UUUGGGGHHHHH!!!!!!!!!!!!!

Have you seen the movie Lilo and Stitch? Do you remember the part where the sisters get into a fight and they both end up screaming into the pillows? Well that is what I did this morning. Kya asked me what I was doing and I told her Isabel's surgery was rescheduled and I had to figure out her sleepovers all over again. Her reply was "Maybe we should have a sucker mom?" I love the simplicity that children live by. So I guess Kya and I will go raid the cupboard looking for suckers. Now I can't help but think about a very famous line:

"A SPOONFUL OF SUGAR HELPS THE MEDICINE GO DOWN"

(who doesn't love Mary Poppins?)

Isabel's upcoming surgery

I know that there will be a lot of friends and family concerned about Isabel and wanting to know how she is doing. I thought this would be a great way to provide information without having to retell the events of her sugery over and over. I am expecting this to be an overwhelming experience alone. We are greatful for all the love and support we feel from our family and friends. THANK YOU!!!!! PLEASE KEEP HER IN YOUR PRAYERS.