Stressing out....

I think when life becomes so crazy, I just leave. Of course, I mean concerning the blog. Let me begin by saying I have more help than before due to Kourtni who I have blogged about already. I was able to leave this past weekend to go on a knitting retreat with 5 wonderful ladies. Probably to some this would sound boring. But remember in my life, I long for boring! The couple who ran the bed and breakfast were so nice and accommodating. We shared many laughs, ate wonderful food, and slept as much or little as I wanted.

I had recently reported that Annabel was going to need a vesicostomy. I believe this procedure is a good one but I don't like the fact that she will stay wet all the time. I have talked with several moms and they all say the same thing. Very hard to keep your child dry, they have skin breakdowns (we don't experience this as of yet) and also many yeast infections. I have gone back to cathing her every 3 hours and many times during the night. I am using her feeding pump like an IV to keep water dripping during the night to flush her out. I have also gone back to doing the Gentamycin Irrigation twice daily. All this in the hope that we can keep as many infections at bay until I can be comfortable with the surgery needed.

This past Thursday we had a visit with a neurosurgeon that our Physical Medicine doctor wanted us to see. Annabel was never really considered to have scoliosis but she has a very noticeable curve to the left. So much so that her sweet little head goes right off the head rest on her wheelchair. She also had some changes in the upper chest areas. Almost as if the area is being pushed out. Her kyphosis is still there with changes also. So when we saw the doctor on Thursday he said surgery right away. He looked at MRI from 2007 and said she did have a tethered cord. The surgery is not a big surgery but he said could offer her some relief. It could help her little body straighten up and also help with the neurogenic bladder/bowel. In 2007 the MRI or x-rays showed almost no scoliosis but this months x-ray showed a significant increase. Her little ribs are almost closed on the left side. It broke my heart to see this difference in her little chest. All this said that she is probably in much pain and she doesn't even let us know. It is breaking my heart with so much changing. So much that I just don't even want to think about it. I don't like surgery, don't want to put her through it, but then again if it can help... All this to be said that God truly blessed us with a wonderful neurosurgeon. He was so positive and never questioned if Annabel was worthy of this surgery. He was thorough and informative. We are going to try to get another MRI(for updated purposes) but looks like they are scheduling for this in December. He said MRI wasn't necessary since he had one already so we may proceed. He had me sign surgery releases when we were there. He will need cardiac and pulmonary clearance then he will proceed.

After this Annabel had to have her button changed again. This is one tough little girl. Since Annabel's mini-one is a non-balloon button it has to be changed in the doctors office. Kourtni was with me, thank goodness. This makes me weak at the knees. They do not sedate in any way and she again did the no sound but tear running out of both eyes. The button is really great but we have been unlucky with the last two.

On Friday we had our cardiology appointment with our new cardiologist. She had recently had an echo and a halter monitor placed. In the last 6 months she had little change, which is good. She does have pulmonary hypertension but at this point is considered mild. Her large VSD is still there but it is working in her favor now so no surgery there. Thank you, Jesus! When the doctor called to report on the halter a few weeks ago he said that it was a very strange looking report and that he would have to consult with his colleagues. So at our appointment he listened a very long time to her heart. He said she has very high/highs and very low/lows but that these seemed normal for her. In my heart I know these are not normal but that this is something that is changing month by month. This was our first visit with the Houston doctor and we just need to be established and let them get their baselines. He asked if it was staying low/high like just minutes or more like hours. I said "oh no, just minutes". He said that was ok. Well of course, Sunday night it lasted for over an hour with going down to 30 and then above 220. Way more lows than highs. Then last night she went higher than ever which was 257 and then down to 31 for almost an hour. She was awake and this normally happens during sleep. She was also very restless, not moving but just couldn't relax. Finally, at 2 a.m. I disconnected her from everything. This is what is frustrating that I know something is going on, it is progressing but there is no help. I really did like this new cardiologist but he just doesn't know Annabel yet. Another thought is that Annabel's heart rate does go up when she is in mega pain. The only difference is that she doesn't follow or begin with the lows. One good thing is that Lance Armstrong's heart rate is sometimes in the 20's. He has a great ticker, right???

She also is having some airway issues. She doesn't have a cold or a respiratory but just trying to control her secretions. We have cut back on the meds to see if this will help. Sometimes a higher does doesn't work any longer and we have to cut back to try to thin the mucous.

I am more comfortable with the surgery for the tethered cord than doing the vesicostomy. Praying that this will help her chest/lung function, straighten her back to where she was and reduce back/leg pain, also play a vital role in her neurogenic bladder/bowel.

I am reminded that we have been given much time with Annabel. I considered it good time with such a happy, joyous baby girl. I think these are just bumps in the road and she needs a good tune-up. What I do struggle with is the reality of this terrible disease called Trisomy 18. The fact is that her little body is becoming weaker and her functions are slowing down. Please pray for Annabel to not be in pain since she cannot let us know what she is experiencing. All the specialist that have seen her as of late have commented on how tough she truly is. Well, we know that!

I need to thank my family who is so involved with Annabel. The older kids bring Annabel so much joy. My family also has been wonderful with Kourtni moving into our home and making her a part of our family. She has been great putting up with our crazy home also. I am so thankful for the relief and help that I have been given. Right now, I truly don't think Annabel could be loved on more! I also want to say that we MISS our soldier boy. Thank God he is still stateside, but I wonder what I will do come December when he is so far away.

Some good days...

Annabel has had about 3 good days and nights!!! he is still not eating like she was but she is eating a little more without all the gagging and wretching. I was doing what the urologist said and that was to ignore her infection. With Annabel, I can't just do that. She got too sick before he decided to do something and then she just couldn't bounce back! But smile are easier to get and that is a great sign. I am still researching about what is best as far as vesicostomy or what else. We are cathing her every 3 hours just to keep her drained.

My Soldier, Homecoming Week and Nanny K...

FINAL DEPLOYMENT SENDOFF:
Sunday we traveled to Houston to celebrate with smile and tears the final sendoff of Tyler's unit. This was the largest number of soldiers from his company being deployed since WWII. It was held at Minute Maid park home of the Houston Astros. There was to be a parade outside of the stadium and then process in to the stadium. It rained so much of the day but the soldiers still marched. We are so proud of Tyler and of course all the soldiers who do their job so we can live in the land of the free. Tyler will still be stateside until early December. I think that is probably when I will totally fall apart. I am sad when he leaves but knowing he is still in the US bring comfort. Tyler has always wanted to be a soldier and loves to wear the uniform. I can't say enough how proud we are of this sacrifice he will be making for all of us here! Love you and will miss you more than you will know. Stay safe and healthy. We will be praying for you constantly and remember He will never leave you.
In the second to last picture Tyler was able to run/walk the bases with Annabel. They allowed the soldiers to do this with their family/children. He carried her along the base path and at each base he let her touch her feet down and stand momentarily. This is the picture where he let her down on 3rd base. Thank you, son for loving your sister with all your heart!
The last picture is of Tyler and his Aunt Lira. Thank you to his meemaw and pawpaw, aunt Valeria and Robert for driving to Houston in the pouring rain. I know he was happy you all were there.






HOMECOMING WEEK...
It has been a hectic week for Carly and Colette. Each day was something different at school. The first picture was Celebrity Day. The twins and 3 of their friends dressed as the spice girls. They were so funny. They all spent the night here so they could get ready and go to school together. We got many laughs watching them put on their outfits. Colette was sporty spice and Carly was baby spice... Check out the one in leopard print, this is Brianna who was scarey spice and what do you think their Catholic High School thought when they arrived.
Carly was duchess of the SADD organization, so she was involved in the parade and being presented by her daddy on the field at the game.
The last picture was the girls dressed for the homecoming dinner and dance as they waited on their dates to arrive. Thankfully everyone had a safe evening.







KOURTNI...
Well here is the newest member of our household. This is Kourtni from Utah. We have known Kourtni and her family for several years. We met at the first Trisomy conference we attended and they have loved Annabel ever since. Kourtni was just finishing up with school in early summer and we were talking about what she was going to do. I asked her if she would be interested in relocating, coming to Texas and possibly being Annabel's nanny. I was not having much luck with nursing as I feel I am pretty picky. She said yes immediately so we continued to talk and make plans. We would meet at conference again and then in September she would travel to Texas. We were not able to make the conference due to Annabel's health. Kourtni went on vacation with her family and then went to work in Africa at her aunts orphange. Talk about a very motivated, giving, loving, smart, sweet young lady. How am I so lucky??? Finally, we made the arrangements for her to travel to Texas. I hate to whine, but lately I have been exhausted and found myself welcoming an extra set of hands. As you can see, Annabel took to Kourtni right away. Another good thing is that Kourtni is a licensed massage therapist and as you can tell she is benefitting from some much needed relaxation. We are all fairly jealous as we watch Annabel recieve several mini-massages daily. It is my prayer that Texas agrees with Kourtni and that this crazy group of Shelanders don't run her off.
Here is a short excerpt of what Kourtni's jobs were at the orphanage..think she is over qualified??? Also, he blog where you can view the children that stole her heart at the orphanage is: kourtnisjournal.blogspot.com You may have to scroll thru a few entries to find the pictures and the descriptions of the children.

Whats my job?

While in Africa I was kept so busy and had to do so many things that I don't remember what my job title was to begin with. I had to be a pharmacist and get medicine for the kids, workers and those in the community; now I may not know how to pronounce things or the exact thing they should be used for but I know what color liquid medicine to give them for the flu, what size pill to give them for malaria, how to help a headache, etc. etc. I also acted as a nurse, bandaging up cuts, burns, scrapes and owies. I was a doctor who took care of sick kids, I slept with them when they needed extra watching and love during the night or I had them sleep with me so I could keep an eye on them. I was a bank teller and would give out money when needed and when we could help out. I was a boss/manager and handled all the employees, made sure they came to work and were doing their jobs. I was a referee and helped when there were arguments among the children or the workers and other volunteers. I was a taxi driver and drove people to the clinic, school, to their homes, etc. I was part of a hearse and ambulance crew who would take emergencies to the hospital or dead bodies to their homes after the passed away. I was a teacher and helped teach our kids when all the teachers decided they wanted to go on strike. I was a cook and helped cook meals at times. I was a maid and helped wash the laundry and keep everything picked up and clean. I was a caregiver and helped care for, love, play with and watch 39 amazing beautiful kids. Wanna know something? I absolutely loved every single minute of all of it and would do it all again in a heart beat if I could! So whatever the job may be I will take it! I will do it! I loved being there!!