Annabel's field trip...

 This is Annabel's new nurse, Rachel. We are so excited to have found her.  She will be our PRN nurse as she will still be attending nursing school. We have waited, sometimes not so patiently, but now feel the wait was worth it. We still have Rebekah, our very first nurse also but she is only working one day a week. Since Motherhood, she loves staying home with her little one and we understand even though we miss her. She normally come on Saturday. 

 

The rest of the photos are from Annabel's field day. This is the bowling ball push. She truly looks like she is enjoying herself. I haven't heard how she finished in this activity.

Earlier today she was entered into the 25 yard dash where she took 2nd place and the 50 yard dash where she finished 1st. This was a wheelchair push with her sweet nurse pushing her. Go team Annabel and Rachel.

Because of you... I am

To all of you mothers out there, Happy Mother's Day to you! I hope your day is special in whatever way you choose to celebrate. Many of you are mothers now, soon to be mothers, and some of you have children that have gone to Heaven before you. There are also many mothers out there who have made the sacrifice so that mothers like me, could be mothers. I truly don't just think of my birthmoms on Mother's Day but each time I kiss my children goodnight, or become lost in all the memories of them growing up, and in my prayers for all that I have been given.

I will begin with my mom who none of this would be possible had she not given birth to me. I had an older sister and younger brother. We are all a year apart so I can only imagine how busy she was. I have heard it said both ways that the middle child has the most trouble or that they are the most adjusted. Well, in my mind my sister and brother were perfect so why should I follow that same path, right. Unfortunately for my mom I made the rule/or changed the rules as I went along. Now that I am a mother I can't imagine the sleepless nights she had or the many rosaries said on my behalf. I want to thank her for all the understanding and patience that she extended to me. I love you momma, you are the best!

This is for Tammy who almost 29 years ago, on her birthday gave birth to my son. Wow, how hard this was to place her first son into my arms anyway, but on her birthday, what a sacrifice! What an answer to my prayers. I had been told that I would not bear children and all I had ever heard was adoption was almost impossible. But God placed Tammy in the care of my family physician to deliver her baby. He had told me I would never conceive but not to worry for he knew that I would be a mother. I remember the afternoon that he called and asked if we were ready to adopt. My beautiful, blond first born son was born two weeks later. I had become a mother and I owe so much to Tammy.

To Denise, who just shy of 26 years ago gave birth to my first daughter. This was also her first and only daughter and she made the sacrifice and trusted me to raise her daughter. Tara is beautiful with her red hair and fair skin. I was so thankful and I remember the call that came in the wee hours of the morning (2 a.m.) that told me our little girl was born. Since I had a son I secretly yearned for a little girl. For all I knew this would be all of my children. Of course, I couldn't sleep so I began stitching pink on everything I could. I had my little girl and for this I owe so much to Denise.

To Karen, who 22 years ago gave birth to my tiniest child yet. Tyler was born 8 weeks early and his birthmother was considering placing him for adoption but wanted to meet and choose his family. We were so lucky to be asked to drive to meet her, and upon leaving she asked did I want to hold my new son. He is my soldier, my tallest child. He was so frail when we brought him home and it was Christmas time. I truly sat/rocked and marveled at how I had been blessed and couldn't imagine anything more. I had my 3rd and what I thought would be my last child and for this I owed Karen so much.

To Melissa, who made the choice 17 years ago to place her twins for adoption. It doesn't matter if it is one or two, you give your heart away. Two tiny, blond, pink little girls came into our home. Carly and Colette were full of life from the time they were born. On our worst day, they could make us forget all of our troubles. Wow, five children and I couldn't have felt more complete and so blessed. Our house was busy with children and that was all I had ever dreamed my life to be. They will soon be leaving for college and I can't imagine the silence that I will be feeling when they go. Thank you Jesus, for my Double Blessings!

Again, I am reminded that I am not in control. God is in control and know the plans He has for us. This would have been the time that life would become a little more free, time to slow down, to adjust to the empty nest...but that was not to be.

To Amanda, a little more than 5 years ago who place her little girl for adoption. She made the sacrifice to place her little girl who she believed was healthy with a young family who would be experiencing parenting for their first time ever. What she didn't know was that her little girl would be born with Trisomy 18. This is our little girl Annabel, who was born first to Amanda, then placed with Karen and Chris at the hospital who loved her very much. We were all told her life would be very short and tragic and the decision was made for her to be returned to the agency. For whatever Gods plans are, she is our daughter, He continues to bless her days, and she is loved by so many!

So to everyone single one of you, my mom, my birthmothers, step-moms, fostermoms Happy Mother's Day to you!

Being thankful...

Just a quick note of praise and thanksgiving. Dr. B went to M.D.Anderson today for her first appointment, was scheduled for surgery tomorrow. The good news is that the oncologist (thankful that she got into her so quick) think it is not cancer! She will still need surgery so please keep her in your prayers but I think not until next week. Praying that God heals and gets her back on her feet. Well, I really know he heals...

Next, thankful for our new Dr. J who is Annabel new urologist in Houston. I had all but given up hope on urology, which of course, is a big problem for Annabel. This was our 2nd visit. He is so approachable, gives us timelines and help setup appointment in the future. He recommends equipment (such as foley cath, etc) and says he will help us with Medicaid to get what is needed. The results of her CMG from last week are definitely an abnormal CMG. Says she needs the tethered cord surgery, for many reason like her body curving sideways, bowel and bladder, lung capacity. So I feel sure it is needed and he(urology) will follow up 6 weeks after to see if there is improvement in her bladder function. Only if and then he finds that it didn't work will we then revisit the vesicostomy or Mitranoff (sp) procedures. I have never felt in such good hands, with Dr. B (pedi), Dr. J (urology), Dr. J (neurosurgeon), Dr. V(pulm), and Dr. S (cardio). I am going to relax and know that God is in control and know He will surely lead us in the direction He would have us go.

Thankfulness for Connie in her recovery from surgery. She finds out the results of her surgery (mass) tomorrow afternoon. Lots of prayers for these results. Mallorie was also put in the hospital again briefly but is home and feeling well today.

Thankful for two days in a row of phone calls from my soldier, Tyler. I guess I can't let myself get spoiled. From what I hear when he is at his final destination it could be weeks, like maybe 6wks. and I not hear anything. Lets see if I still profess that I know God is in control.

Let me not close by saying how thankful for all of you! There are days I think I can't continue this blog but then I just think of these people who have come into our lives from all over the world. Praying for you all and your families.

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.

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!!

Longing for boring again..

Well my Tyler has left with his unit. He is still in Texas but he can't come home anymore. I can call him and talk with him so I am not experiencing those far away feeling like when he will be in Iraq. My mother cooked his favorite rice and gravy with all the fixings. We enjoyed being together. We then went to the Astros game and watched our soldier walk out of the field prior to the game for our National Anthem. Wow, was that emotional! I think I maybe a wreck for a while now. Yesterday morning when I brought Annabel to school they played the National Anthem and I was crying again. What is up with that????

Annabel's Aunt Lira (my sister) and her boyfriend Robert took her to see Playhouse Live. I can't download the pictures yet so they will follow. Aunt Lira said she had a great time and paid very good attention to all the bright colors and activity. We are so thankful that they take up this fun activity so mommy doesn't have to.

Last night, Derek, my oldest celebrated his 28th birthday. We had a great time with family and friends. They food was great and especially the desserts. We need to thank meemaw for a wonderful chocolate cake, buttermilk pie and chocolate pie with fresh whipping cream. Yes, I did have a sampler platter of desserts. We are so thankful that Linzy's family came over and shared in his birthday with us.

Annabel did have her ECHOcardiogram and 24 hr. halter monitor this past Thursday and Friday. I have not yet recieved the results from these but do expect them in the next couple days. The reality is that things are changing with Annabel concerning her heart and her lungs. The new words are pulmonary hypertension, fatal disease, cardiac cath, medication (not a candidate), lung transplant (not a candidate of that either). All in all Annabel is doing good. Her troubles come during the night when she forgets to breathe due to a few factors. Hopefully, in the next couple weeks we will have some concrete answers.

The goods news is that she is gaining weight. Back in April (prior to sleep study) she was at her top weight 24 lbs. As of this past Thursday, she weighed 24 lbs. even again. She is eating the same amount of baby food as she was back them. We are so thankful to Michele (her milk mommy) for her continued pumping and their hospitality in letting me stay in their home while in Houston. Also, Rhyder's mom has been giving us some of the newborn milk that since Rhyder is taking such small amounts. Her is that early breastmilk with all that good stuff in it. These are temporary but we are also getting milk from the milkbank. I truly believe this has helped Annabel get back to her highest weight ever and also help with her gut healing.

We were not able to go see the Botts and attend Brianna's memorial. That was such a tough decision but we can no longer pick up and travel with Annabel needing oxygen to sleep. I was able to talk to Brenda again and she is having a tough time. I truly can't imagine how a mother's arms feel after lossing their child. Please continue to visit http://www.briannagiveshope.blogspot.com/

as to they will be adding video of her precious life and maybe add her some uplifting comments.

As far as Rhyder goes, he is at TCH, they are giving him caffine and I believe this has made a great difference in his breathing. Connie, Mallories mom, has been a wonderful source of information to Dave and Michele, Rhyder's parents, and for this I am thankful.

Annabel Leigh is home from the hospital and they are treating her for a respiratory infection. They are helping relieve her stuffy nose. This is their first child. I can say I can't imagine being a first time parent and experiencing all the unknowns of this trisomy 18 journey. Her blog address is http://www.sweet-annabel-leigh.blogspot.com/ .

Rhyder Anderson needs our prayers...

Michele and Dave Anderson

Rhyder and his family desperately need prayers. He is not quite 3 weeks old and has Trisomy 18. I was so fortunate to visit with his family this past Thursday and I was able to hold him. He is having central apnea spells very quickly tonight and he has pulled through a few other times. They want so badly more time with their lil man, Rhyder. They do not have a blog, but are on facebook. His parents are Dave and Michele Anderson. You can request their names on facebook and follow Rhyders journey.

I just found out that they have begun a blog for Rhyder.

http://www.rhyderanderson.blogspot.com/

Update:

Talked with Michele this morning. He was brought by ambulance to TCH and is now in NICU. They had begun to give him caffine at home for his central apnea but sometimes you have to adjust the levels. It is not the same for all. They admitted him and placed him on C-Pap to help with his breathing and try to get his caffine level adjusted. I know his family would treasure your prayers for this little bitty Angel.

Annabel meets sweet Rhyder...

Update: briannagiveshope.blogspot.com

It was so good to hear from Brenda yesterday. My thoughts were with them as they held Brianna's memorial service. I so wanted to be there, but just not possible. She sounded wonderful. I loved hearing how beautiful the service was and how they have been so lifted up by family and friends. They are truly God's faithful servants and know she is in a better place. Of course they miss her terribly and that will not end. But to be at such peace, what an amazing gift. Please contine to visit Brianna's site for a video that her and Jerry made for the memorial. Also, when they recieve the video of the actual service they will also share this with all of Brianna's followers. Please keep them in your prayers as there will be times that are low and times that are high.

Annabel Leigh, Trisomy 18, 4 1/2 mths.

I talked with Annabel Leigh's father on Thursday about his precious little girl Annabel Leigh. I love the name.They were struggling with decisions. They are on hospice and they were making decision to do more interventions. She was retracting and they were trying to decide about taking her to the hospital to rule out respiratory or other issues. This is their first child and want to give her every chance they can. I have not spoken to him again and not seen an update on her blog. If you would like to visit this little Angel who is so full of joy her address is:

sweet-annabel-leigh.blogspot.com

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.

Brianna Botts...

Again, I come to you asking for prayers for Brianna and her family. They have been on a roller coaster lately and it still continues. Things are not sounding so great any longer and some very important choices/decisions are having to be made. Pray that God will hold this family in the palm of His precious hand as they find professionals to help and guide them. Pray that Brianna will not suffer if He chooses to carry her home. But with that said, we pray that more time will be given her family who was chosen to be her family a long time ago...

You can read more about Brianna and their journey at briannagiveshope.blogspot.com

Wishing for a break...

That is my prayer for sweet Annabel. She had 3 good weeks after the surgery and for this I am so thankful. She did amazing during the surgery and after the surgery during her recovery she did as well as she could. We were home in the expected amount of time. She had some great nights with good oxygen levels. She has had long periods of time without miralax, without being cath'd, and with less spells of apnea. I do believe the bowel helped to give her more space and less pressure everywhere. The bladder surgery worked but only briefly. She is now on two antibiotics and still not doing good. We are having to cath her sometimes, I am just not willing/or believe this is in her best interest any longer. She has experienced the psuedomonas and e-coli thus far. I am so thankful for our Dr. B(pediatrician) here locally. I feel we no longer have a urologist. He continues to question me when I go there about how do I really know she has a urinary infection. I stayed with her first urologist over 3 1/2 yrs. because I wanted consistency with her care. So I was told that this last urologist who did her dilation was wonderful and a people person. He is truly not a people person and he has the most combative personality I have ever seen. I have been questioning his care and concern for Annabel. The bulk of the urologist are there at Texas Children's and it is so hard to just switch again. Then I look like I am just unstable. It is not fun to not have a specialist when this is what is her big issue right now.

With that said Annabel is just not coming back. She has some flickers of energy and her sweet self shining through. But overall Annabel tires very easy and is just basically weak. It is hard to know if it is the infections, the combination of antibiotics making her tummy unwell, too much therapy (fatiguing her muscles), her spells with the apnea rising back to the levels prior to the surgery. She doesn't care to stand and sitting is not going well either. If she does sit unaided she hangs her head back and eyes roll back in her head. Overall so weak.

We had an appointment with our pediatrician on Wednesday, for supposedly a well check. Some how since we switched she has never had a well check up. I was sharing some of this concern about Annabel and her overall well being. She asked how long she was under anesthetic. I told her 3 1/2 hours. She said that for each hour she basically needs 1 month of recovery. So for Annabel she should have 3 months to recovery and get back to where she possibly was prior to the surgery. Let's just say I waited 3 weeks and dove right into therapy. Yes, then when she was in the hospital I brought her stander because she didn't appear sick enough to be in the hospital just laying around. With all this being said, we are going to back off of PT and expecting her to stand for long periods of time. This is so hard for me because I want to see improvement and feel that we are working towards a goal. Sometimes I wonder if I have really ever accepted the fact that Annabel may not walk. I have to really question am I doing this for me or what is best for her. I know I will love her and cherish her if she never sits, walks talks, etc. But I keep saying I want what is best for her. I am going to try for now to just give her rest, pump her up with some much needed calories, do some stretching and not have her on such a rigorous schedule of running appointment to appointment. At the end of her appointment Annabel needed three immunizations. She had had all of these before so no worries right??? NOT! They gave the shots, she was such a big girl and accept for a brief gasp of air each time she was stuck, not one tear was shed. This baby endures so much! Hello, I think I need to learn from her. We left, the drive home was about 6 minutes. I went around to get her out of the car and she was purple around the mouth and gasping for air. When she seemed to get the air she wretched like she was trying to vomit. I began requesting loudly for help from inside the house to get her in. We hooked her up to pulse ox and her oxygen was low and her heart rate was 190-200. She began to turn red. She was clawing at her neck and both arms were jerking and shaking. It was frightening for all of us. She was struggling in ways that I had not seen. So yes, I PANIC, and call 911! They were here in about 3 min. giving her oxygen and assessing her. I am embarrassed to say that I DIDN'T even think of Benadryl. So after about 20 minutes I looks at the EMS worker and said should I have tried Benadryl. She said well you can if you want to. Why I didn't even realize right away this was probably a shot reaction and think of Benadryl, I don't know. Maybe because she has never even had the slightest reaction to any shots. They waited with me while I gave her the Benadryl. Things began to improve and I just explained that I felt we didn't need to go to the hospital. They couldn't advise me but I felt they agree that it was probably a reaction to the shots and that she was more stable now. Oh by the way, I did try to call the pediatrician first and they had closed and didn't refer me to an answering service (probably if they did, I was so crazy, I didn't hear it).

Anyway, I don't want to sound ungrateful. We were able to have a good vacation and enjoy good family times. Thank you to all who read and check in on Annabel. It is truly your prayers that keep us going. Your friendships are a great source of strength and so treasured.

Beach week and family...

I guess being a mom there is nothing like having everyone together and seeing so many smiles. I want to thank my family for making all the efforts to spend the week here at the beach. Also, to my son Derek's friend, Linzy and to Tara's friend, Tanya and to Carly and Colette's friend, Brianna who spent the week with us. To my parents who took their whole week to come here and to my mom for all the wonderful cooking that was done. My brother from Dallas who brought his two younger children here for the entire week and his sweet wife Paula who flew in on Wednesday evening to spend the rest of the time with us. My sister who joined us Friday afternoon and her son (my godson)and his friend, Molly who surpirsed us very late Friday night.
My prayer is that lots and lots of memories were made. Hopefully good ones that we can look back on and laugh. The arrangement of the home was perfect. On the ground floor was a wonderful outside kitchen, big screen TV that we could all watch from the pool. There was much fishing and crabbing off the dock by most everyone. There was many games played, lots of segway rides, swimming, reading, waterparks and Moody Gardens.

Even though there were many of us here especially over the weekend, a total of 20 in all! Today most began to leave and it became so quiet. Yes, quiet is something I long for but this past week has been wonderful.

Annabel began the week here but wouldn't sleep well and seemed very uncomfortable. It didn't hit me that maybe the antibiotic wasn't working. So on Thursday, Mel returned to work for the day and brought Annabel home to Ms. Edie. She spent 2 nights at home and also on Thursday the doctor called and said she had E-coli and that her antibiotic wasn't doing the trick. So with that Edie went to the pharmancy and began her new medicine and then on Saturday she joined us back here at the beach. How I long for time to just read, sleep, swim or whatever, whenever I want but very quickly that gets old. Everyone here were waiting for Annabel to rejoin us with open arms. Shauna her sweet cousin was so excited that she was able to spend time with her before she left. I love to see Annabel interact with her younger cousins. Also, except for the loose diapers from the antibiotic she seems to be more comfortable. Praying that all of your summer is going well. It will be the school year again and I can't believe summer will be over.

Brianna, Colette and Carly

Tyler entertaining Annabel and his cousins...

Annabel, Derek and Linzy...

Annabel and Tara...

Meemaw, Grumpaw and the Grandkids...

The Shelander's ...

Corey, Molly and my sister, Valeria's family...

Shauna, Carl (my brother), Paula and James Griffith

Brianna needs our prayers...

I feel so sick. Brenda just called and they have Brianna back in the hospital. Please pray they get Brianna transferred to a much larger facility. She is having more spells turning blue and not getting enough oxygen. Brenda talked with the pulmonary doctor and he said she definetly has pulmonary hypertension and Brenda seems very concerned with what she heard. If you are just reading about Brianna for the first time she has full Trisomy 18. She has turned two recently.

The immediate concern is to get Brianna to another hospital. They were at her moms and the hospital is a small community hospital. My heart is breaking for Brenda. I will keep you posted when I have heard more from Brenda. She is having trouble getting a signal to go through.

Beach Week...

What a catch!!!

Colette, Brianna and Carly...

Shaunna (Annabel's cousin) sharing with Annabel all about life...

James (cousin) and Uncle Carl having fun in the pool...

Fishing and crabbing on the dock...

Derek and Annabel on the ferry ride over...

We are having a good time at the beach. The house is actually on the bay side so it is so nice to just sit on the porch and enjoy the views. I will just post a couple pictures today and then later possible do a slide show of our week. My parents have joined us and also my brother and his two children. His wife will be flying in this evening to join us until Sunday.

As far as Annabel she won't be her smiley self in all the pictures. She is not feeling as well as usual. It became obviously that she was getting another UTI on Monday so before heading out her pedi did her culture. She definitely has an infection but the culture results won't be back until today. It is so hard to watch her be in such discomfort. There will need to be more permanent procedure, that we know. She hold over 100 cc after urinating on her own consistently.

Hope every is having a great summer as it is going all too fast. The trisomy or SOFT conference is beginning tomorrow and I am sad not to be there to see old friends and meet new ones! But so important to spend this time with my family.

Prayers and Thanksgiving...

I just talked with Brianna's mom. They had a scare with her last night. Please keep her in your prayers as they try to discover what is causing her spells. Brenda will be making her own post soon. It is such a reminder that with Trisomy 18 one minute they are fine and the next you can have the scare of your life. To visit Brianna's blog just click http//www.briannagiveshope.blogspot.com/

Also, in thanksgiving for Alyssa who has turned one year old today. To get thru this first year is huge. It never means our babies are safe, but it just helps defy those odds that 90% to 95% do not survive their first year with Trisomy 18. Please pray for Alyssa's family as they continue to cope with this diagnosis and the trial they will continue to face. To see Alyssa click here http://www.wndrfllymde.blogspot.com/

The following pictures are in honor of Alyssa's birthday. They ask that we wear T-shirt with money donated to two organizations and a sweet bracelet for Annabel and one for myself.

A PURPLE "A" FOR ALYSSA

T-shirts sold for Alyssa

Sweet bracelet that was also sold for Alyssa

It has been so nice to be back home. Last night all the kids were home and we made homemade pizza and most everyone helped. We all talked about our week at the beach and how excited we are to have my brothers family coming. He has two young children that we will get to spend the entire week with. My parents will also be coming for the week. Tara will have to work and will come up on the weekend. I am hoping my sister will take some time off during the week and come up for more than just the weekend. My nephew and his girlfriend will not be able to attend as the same for my brothers oldest daughter. We would love everyone to be there but we understand sometimes things come up.

We traveled to Houston today for Annabel's follow up appt. with her urologist. With the onset of the UTI last week and the IV antibiotics it was my hope that the decrease in her output into her diaper was due to the infection (pseudomonas). My hope was that when the antibiotics took care of the infection that she would have all those huge wet diapers back. Since we have been home the last couple days this is not happening. My homework from the appt. today is to catch her as soon as she wets her diaper and then cath her immediately to check her residuals. (With Annabel this is not that hard since she strains and then her diapers becomes so hot with the urine). So according to the doctor he wants less than 30 mls. for residuals. The last two diapers this afternoon upon returning have been 50 and 51. Each cath has been 120 and 102. With the infection gone(culture came back negative upon finishing the antibiotic) she still is not emptying her bladder. He wants me to check this 6-10 times and see if this is consistant. He did speak of the vesicostomy today and reminded me we knew the dialation was temporary. Actually, I knew that but thought we would get the 3-6 months out of it. But I don't want to forget how well she did during her surgery. God was totally incharge and He carried her along the way. My twins traveled to Houston with me today for her appt. On the way home as we were talking about what the doctor said and what we are going to do now to see what direction we will be going in with her. One of the girls asked the question "do you think what we are doing to care for Annabel is fair?" Also she said "do you think that we are making her have more pain?" It gave us a great chance to talk about how when I make these decisions that I am trying to make her comfortable for the time she is with us. If we weren't doing these things like, bladder/kidney, bowel, feeding tube placement that she would be very uncomfortable. It lead us to talk about bigger issues that could one day surface like her heart, kidneys or the possibility of Wims tumors(cancer) and we talked about doing things that would hurt her and possibly not change the outcome. Well it was deep but I was glad they were able to share what they were feeling. I think we all feel this and may not let ourselves share with each other. I will continue to whine about this thing I dislike so much, the monster called TRISOMY 18!

Tyler with Annabel

Tara with Annabel