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Thursday, August 27, 2009

Rhyder, Brianna and Annabel...


I have talke with a precious family who live fairly close by. Yesterday another miracle was born. His name is Rhyder and he is the son of Michele and Dave. They don't have a blog but I have seen pictures on facebook and he is so cute!! He does have trisomy 18, like Brianna and Annabel. At this point he seems to be doing well and he is going home with his mommy and daddy tomorrow. They have two other sons who are very young. Their hands will be full with all there is to do, the stress of having a lil one with trisomy 18. Please keep them in your prayers and I will surely be the first to let you know when they have a blog.

Brianna continues to have some spells, blue, high heart rate, low sats...They are in the midst of this time of appreciating each and every moment but also knowing that their moments maybe limited. Please continue to be with them in your thoughts and prayers. I find myself admitting more and more this is a tough road.

As far as my family we are getting back into the school routine. I love summers with no schedules. I do have to say that school is such a blessing to me where Annabel is concerned. She is safe, loved and sooooo stimulated. She comes home so happy, ready for some lovin' and ready to got to bed out of sheer exhaustion. This week has been an emotional week for my twins, Carly and Colette. We woke to an early call this past Sunday morning, from the asst. principal telling of their friends horrific head on collision the night before. I have always loved the fact that they go to a Catholic school where they can openly share their faith. This week we all got to see their faith in action. They all came together at school Sunday afternoon for a prayer service. Another Mass said at school on Monday. Since the visitation and the funeral were a few days away, the students just met at families homes to be together. Many time spending the night and all going to school together. Last night was the visitation and today the funeral. It has been an emotional time for these seniors. My prayer is that they will turn this horrible tragedy into something to honor their friend Ashley LaBiche. Her family is hurting so, but they are a family of strong faith. We will all pray for them as they accept this loss.

We are also getting ready for my son's deployment. We attended another yellow ribbon weekend as a family. It was a good time had by all. This is our first family member so we are learning so many new things. I think I am beginning to realize this is going to happen, that he will be leaving my son and returning as a soldier.

Annabel continues to struggle with her UTI's. She did great after the surgery for three weeks. Since then she has not been free or off antibiotics for more than a week. Our pediatrician is wonderful and without her I don't know what I would do. Our urologist doesn't expect her to ever be negative of bacteria again. He also doesn't want us to treat her. This has been my fight since mid-July and I am worn out. If you ever hear us moms talking about having to fight for our childs right to treatment, this is it. It is way too much to explain and too confusing to try to make reason of his reasons.... She will be having some more test on her kidneys (nuclear med scan, renal ultrasounds) and then making a decision on another dilation or something more permanent, such as a vesicostomy. These test are not until Oct 6 and 7th. After this frustrating appt. we went to visit her surgeon. Over the weekend while out of town Annabel's g-button malfunctioned. The top of the valve came out so it needed to be replaced. She had the mini-one and this is what we replace it with but with a shorter size. She had a 2.0 and now is sport a 1.7. Because she had lost the top valve it made removing the button very difficult. Normally they just take the instrument that comes in the kit and locks it in the valve and with some pressure they remove it. Well, not for us. After realizing they couldn't do it this way, the nurse ask me if she had bowel issues....???? HELLO!!! I said yes and then she replied well that won't work. I ask what she meant by this and she said, "well when we can remove them easily we just cut the top part of the button off, push the rest through into their tummy and just let nature take its course!" OUCH! Annabel struggles so much just to get the soft stuff through, can imagine her trying to pass this silicone/latex type button without something happening. Anyway they did use some other instrument that they used to remove a Bard type button. Long story, but didn't know if this has happened to anyone else.

Then our last appt. of the day was our long awaited sleep study. Because she had to go to sleep with the c-pap/bi-pap mask her night was much more of a struggle. A little history, we have not been using the bi-pap due to it causing her episode of choking while sleeping. She has trouble managing her secretions and with the bi-pap blowing it back down she is fighting the machine. So the sleep study was done with the c-pap and she did good as far as apnea episode in the beginning. The new is that Annabel is still experiencing the central apnea and will probably need another study done with the bi-pap machine. We have to wait for the doctor to review and give us a call to know our next step. I had truly hoped that with the surgery it somehow had cleared this problem. I do know removing the bowel has significantly reduced her need for oxygen on a regular basis. Also, she is so much more comfortable with her tummy issues.

Annabel seems to be growing longer. She is now 23lbs. 2 oz. and about 34" long. People comment on her face not being so babyish any longer. Due to her not feeling as chipper the pictures are not as smiley, but will post a couple anyway.




10 comments:

Yin May said...

i can't believe the nurse said that! anyway, good thing they found a way to get it out, the normal way.

The Brezina's said...

God's Blessing upon your family. My dear husband has just returned home from a 13 month deployment safe and healthy. I too am Thankful that we serve a God of Protection! Your son will be on our list of prayers!

Kenzie said...

I love talking to you... I continue to praise God for the miracle of Rhyder's life, and ALSO for that of your precious girl! There are SO MANY of us that love her in a way that is very unique to how most people love others' children... thank you for allowing that for us! Thinking often of Brianna and praying for her and her family!

Love you.

Kelly said...

if you were here i would give you a hug because you sound like you need it. i'm glad annabel is back in school, it sounds like she loves it. i'm sorry she is still having her medical issues.

Wherever HE Leads We'll Go said...

I am so sorry to hear of the loss of the twins' friend. So hard to have to lose someone that young!

I am also sorry that Annabel is still having health issues. It is crazy that you have to fight with doctors to get her the care that she needs! A doctor should know that ALL life is precious.

As always, Annabel looks adorable!

Carla said...

I so enjoy seeing Annabel's smile. I hope Rhyders family starts a blog too. What a blessing that he has made it this far and they are able to take him home with them. Thanks for letting have a peek at Annabel's life....that means a lot to other Trisomy 18 moms. :)

Unknown said...

Cathy, wow! so much going on! We need to send your son's unit a big care package (and thank you) once they are settled. Those serving our country are special and brave.

I will pray for the various concerns you had mentioned (the car accident so sad.)Hoping that Annabel's issue's will become more easily managed. Any picture of Annabel is cute smile or no smile.

take care (and rest)!!

Holly said...

Hi Cathy,
Sorry it has been so long since I have checked on Annabel. When my computer died I lost all my "favorites" and, of course, the link to Annabel's blog. I finally found it again. Yeah!

I am sorry to hear that Annabel is still having UTIs. I had really hoped the surgery would stop these.

Did you have a good time at the SOFT conference? I think we will be at the one next year. After all Sioux Falls SD is only about a 3-4 hr. drive from here. Maybe we will finally get to meet.

I wanted to tell you that I would also be honored if you would add Morgan's website to your links.

Maya, Mieko and Hana's Mom said...

Cathy,
I'm sorry to hear your family is going through so much right now. I hope that Annabel's UTI issues get better soon. It's wonderful to see her smiling face. She's such a big girl now. I hope we get to see her next summer.

lost--for--words said...

Cathy, I want to pass on the Honest Scrap blogging Award to you. I am truly inspired by little Annabel, and your strength. Come see my blog for details.