8.30.10

I took Aimee in for her weight check today and had the doctor take a look at the G tube site. Some granular tissue has been growing around it over the last few days. He did an initial chemical burn with some silver nitrate to try and stop the growth. Glad to find out it wasn't an infection!

8.26.10

Aimee is 18 months old today!
We really feel that she has been changing over the last few weeks. Really waking up. She is doing great with her hearing aids! Very responsive and making all kinds of new sounds. Today she only took one nap for about an hour and a half this morning. No other naps! She has been just talking and laughing all day! We started giving her blended food for her evening snacks last night. Allot of kinks to work out there, but we are up to the challenge (I hope!).

8.24.10

Last week's Adolescent Medicine appointment went really well. The ultrasound results that she received in June were really encouraging. Also, the steroid cream that we have been using worked really quickly and her breast buds have almost disappeared. We will not have to follow up with this department any more, unless we see any changes in these areas.

Yesterday, Aimee and I met with the Genetics department. The Chromosomal sequencing test came back normal as well as two tests for specific disorders. They took two more blood tests. One more for another DNA syndrome and another for a muscular disorder. We are expecting these to be normal and will receive these results in about 2 weeks.

We also had blood drawn to bank Aimee's DNA. Basically they are just freezing it a

nd keeping it on hand. In about three weeks there is a genetics convention at Children's and Aimee's case is going to be discussed. If there are any suggested DNA tests from this convention, we will not have to come back in to the hospital in order to have them done. Also, in the future, if any new tests are thought of, we will have that option.

At this point, the genetics team does think that Aimee has a genetic disorder, however, they do feel that they have ruled out the possibility of a dominate gene. This leaves us with the strongest possibility of reoccurrence being a recessive gene from both sides (25% possibility). It could also be a change in the gene, meaning that the possibility is quite slim of a reoccurrence (about 5%). Thus, with the information that we have been able to gather to this point, there is a 5-25% chance of repeat in any future children.

8.17.10

Aimee and I were at Children's yesterday for two post-op appointments. The first one was with the clinical nutritionist. I was able to convince her to allow me to replace Aimee's evening snack that is currently formula with blended real food. She said, however, that we will be required to buy a certain industrial type blender in order to do so. I just got off of the phone with our insurance company to find out if they help cover it, unfortunately they don't. Shoot! Thankfully God provides for our every need, including a 600 dollar blender!

Speaking of provision, we have been so amazed the past few weeks at the love and blessings we have received from everyone. Love has come in so many forms-Food, clothes, money, dinners and just plain encouragement. Thank you for loving us! Really, really it means so much to us and has been helping us through a challenging financial and emotional season.

We did, however, find out that we were denied for SSI this week, so that is a disappointing. Apparently Ed makes a couple hundred dollars too much monthly to qualify. At least we know now.

We also met yesterday with the GI department to check out the surgery site. Aimee is recovering really well. It appears like the site is healing nicely. We can now bath her and let her lay on her tummy again.

Tomorrow Aimee and I will be meeting with Adolescent Medicine. We'll update at the end of the week with results from that appointment. We will be following up with the nutritionist in about 5 weeks to hopefully add an additional meal of blended foods. Also, at the beginning of November, we will have a follow up procedure with the GI department to replace this temporary G tube with the permanent one. This will be a simple surgery that will not require an overnight stay (as long as she wakes up!).

8.10.10

Sorry for the delay in updating post surgery. We took Aimee in last Monday to have the PEG or G tube placed with the GI and surgery departments. The surgery itself was quite short, about 30 minutes and she was in the recovery room for about 2 hours. We finally got her room number and went up to sit in the empty room and wait. She was wheeled up in a hospital crib to her room. I very nervously picked her up off the bed. She was asleep and I knew she was on pain medication, but I still didn't want to aggravate anything. I wonder how many times in her life I will have to relearn how to hold her! At least life isn't boring!
Well we had an uneventful, but stressful night. Aimee did not wake up and had a fever. Also, her blood pressure dropped down several times. Typically they come check the patients vitals every 4 hours, but they had her on a half an hour rotation and had the different specialists coming in to give us their opinion through the night. They also did several blood tests to check for any infections. Finally, at 8:55am the following morning, Aimee woke up. She was only awake for about 10 minutes to start, but oh my were we happy for those minutes! The anesthesia that was supposed to wear off in about a 10 minute time frame ended up taking about 20 hours.
We stayed an extra night at the hospital so that they could monitor Aimee and we could transition her from the IV to tube feeding. We were released on Wednesday afternoon. Aimee seems to be recovering really well and we have been able to increase the speed of her feedings quite a bit.
We have this week off from appointments, at least the ones at Children's, which is a nice break. Next week we will be going in for her post-op appointment, a nutrition consultation and an adolescent medicine appointment.

7.27.10

Aimee and I were in the Radiology department yesterday for Upper GI imaging. Her anatomy is completely normal, which means there should be no problems performing Monday's surgery. It did appear that she refluxes the liquid that is put down by the NG tube up to her esophagus, which isn't a problem, but nice to know for during feedings.
Ed had a sleep study almost 2 weeks ago and will be going in Friday evening for a follow up consultation to discuss the results. We are really hoping to find a solution for him. For as long as he can remember he has not felt rested upon waking up, no matter how long he has slept. It makes it really difficult for him to stay awake/alert if he isn't really engaged or active.
Aimee's surgery is Monday at 1:15pm. Please be praying!

7.20.10

Welcome to the world URIAH!!!!
We are so excited for all of the fun cousin times to come!

Added to the upcoming schedule:

Aimee will be going in Monday, July 26th for upper GI imaging with radiology to make sure that all of her interior anatomy is normal prior to surgery. We will go in on Thursday, July 29th for a Pre-Op appointment with the Anesthesia clinic. Her surgery is currently scheduled for the following Monday, August 2nd. We should be able to leave the hospital by Tuesday evening, August 3rd. Follow up with begin on Monday, August 16th with a Post-Op appointment with the GI department. Approximately 3 months after the initial surgery, she will have a follow up surgery to place a final tube. 'Final' in the sense that she will not need any more surgeries. It will still have to be replaced every 3 months.

This will give a whole new set of appointments to attend to (oh joy!). There is some good news with it all though-I was told that there is a possibility, once we have installed the G tube, of being able to make her food again. It will be given through the tube, but at least she will be "eating" real food instead of that canned concoction. The nurse felt it was necessary to warn me that making the food is a lot of work. Haha! I'm pretty sure I already understand how much work it is to make baby food and that it is totally worth every second! So what if I have to run the processor for an extra minute and run it through a strainer. It is still only a possibility, however, and it will have to be approved by the nutritionist post procedure.