Waiting, waiting and more waiting...

There has been much waiting on our part. I tend to be a person that like to make a list for each day and be able to cross of what I have done. It seems like for the last month my list has entailed calls to doctors to get clearance, schedule testing and then wait for days for call back. I am beyond frustrated. As anyone who has read this blog surely knows that I have also been frustrated with our urology situation. Yesterday was our visit with the new urologist, which should have been our first urologist when she was just a few months old. The wait to see him is long and I should have been patient. The visit went so well yesterday. He actually examined Annabel, when neither of the last two in almost 4 years has touched her unless in surgery. I was also shocked when he asked if it was time for me to cath her. When I answered yes, he said he want to get a urinalysis and do a culture. Wow, I was so amazed that he was going to actually acknowledge that she had infections. By Friday, he will be placing her on an antibiotic and she will stay on one until the surgery. The last urologist didn't want her on antibiotics and said she would always be positive for bacteria. He also wants her to sleep with a catherter in during the night which should help me get more sleep. He also had a very warm bedside manner which is so encouraging. I like the fact that he had a timeline and also a plan for Annabel. I had mentioned that Annabel needed urodynamic test prior to her surgery for the tethered cord. He said we should have this within two weeks and then proceed with surgery. The test she is waiting is called CMG which test for pressure in her bladder. I am curious as to why the two other urologist have never performed this test on her. So of course, for the first time I left feeling so good after a urology appointment.

I have been so blessed again with another sweet mom who is willing to donate her breastmilk to Annabel. On our way home we stopped to pick up some milk and was able to see her beautiful daughter. She is producing more milk than her daughter is needing and is so willing to share with Annabel. God has sure brought some beautiful people into my life and hers. It was such a relaxing and beautiful day and I was so grateful for our new urologist and to meet Annabel's new milk mommy.

Kourtni(our Nanny) is still diligently working to produce milk. At this time she is producing enough so that Annabel has one full feeding a day. She is listening to all the advice anyone offers as to help increase her milk production. From what we are told that this amount is good for this early.

All of the kids are doing well. Derek is still going to our local college and taking classes. Him and Linzy drop off often to entertain Annabel and I am so thankful for that. Tara is working hard and comes by each and every afternoon also to play with her. Tyler will be home for 3 days for Thanksgiving. He will return on the Friday after Thanksgiving and will leave for Iraq Dec. 4th. I think this good-bye will be incredibly hard for all of us. Major prayers will be needed for me to let him go at the airport. Carly and Colette are busy making their college visits. They have applied to six and already have received confirmation from four. Of course, not yet their number one choice. They were gone for the weekend to visit with their dad at a college about 4 hours away. The home was so quiet and it made me realize that this year is flying by and so very soon, they will only be coming home to visit. It was just yesterday that I was bringing them home from the hospital. So many time I wished they would hurry and grown up. I should have wished less and just enjoyed all the good, crazy times. I can't begin to imagine how much Annabel will miss the activities that they bring to our home.

Thank you for taking the time to catch up on Annabel and her family. The prayers as always are appreciated and I will let you know when the surgery is schedule and for specific prayer request.

Much loved little girl...

Annabel has been doing good. She is probably back up to her highest weight ever. She is eating well and her sleep habits are better, including sleeping with her oxygen. She is back at speech therapy but not at physical therapy yet. We were supposedly waiting for her to have her surgery on her back(tethered cord) but can't seem to get the necessary test that he wants first. This has been over three weeks of me making calls to the hospital to schedule them, waiting for the doctors nurses to call me back all to be told that they are working on this. I was told this could take place prior to Thanksgiving so she could recover over the holidays but there is no way now that can happen. Also, if Annabel can make it until after Christmas that is what I will hope for now. Her MRI isn't schedule until Jan 5th and I really want this first. They drs. have placed her on a priority cancellation list, but I am of little faith where this is concerned. I have been unsettled with the feeling that each day we wait to see if we will be called to make the two hour drive. It is very hard to plan anything at this point. But I am grateful that she is well. She has had no colds, runny noses and we have been free of any type of infections including UTI's. This is really a big deal. We are back to cathing her every 3 hours, also twice daily placing the gentimycin irrigation in her bladder and giving her as much liquids as we can drip in during the night. She is still taking breast milk that I am positive is the reason for the success of her weigh gain and her tummy being as good as expected.

With that said, I have blogged before about Kourtni, our new nanny. She has become more than that. I knew she had a heart for special angels in her life. I knew she would attempt to learn anything possible to help with Annabel. She is very confident and willing to do whatever is best and has become a second set of ears for me when listening to the doctors. That is what my Tara did and it is hard not to become dependant on that. So was I shocked when Kourtni suggested that she try to induce lactation so Annabel would be able to have breastmilk and eventually not worry about prescriptions from the milkbank. With that said our pediatrician is wonderful and so very quick about writing the script for her when needed so no complaint there. I sure didn't want Kourtni to feel that this was expected of her at all, but how could I not be touched that she wanted to do such a thing for Annabel. Annabel's milk mommy, Michele has been such a wonderful support for Kourtni as so has Mallories' mom, Connie. Kourtni researched how to induce lactation and began the necessary steps. From the information that she gathered we thought it would be a month before needing a pump but it wasn't. Today, Annabel recieved her first 70 cc from Kourtni. So that is what some of the pictures to follow are. It is still early but from all indications are very hopeful that she will be successful. She is so disciplined with her pumping and she still helps me with Annabel's needs. I continue to be amazed by what she wants to do to ensure that Annabel has everything possible to help her stay in the best possible health that she can.

The family continues to do well as we are all getting ready for the Thanksgiving holidays. Kourtni has been a nice fit with the family and the girls go eat and go to movies together in her off time. I want to thank my family for adjusting and being so accepting of her. But she makes it so very easy. We will have much to be thankful for this Thanksgiving. I want to thank everyone who contacted me via text, email and phone calls concerning Tyler and where he is stationed. So grateful that he is at Fort Bliss, not Fort Hood. But so sad and hurting for the families who were so affected by this terrible massacre. It will also bring the reality that Tyler will be leaving stateside for Kuwait then Iraq on Dec. 4th. But we will celebrate that we are together as family, that Annabel is feeling well, and that Tyler is home for a 3 day holiday...

Pictures...

Annabel and Ms. Ann (her teacher)

Trick r Treat at Ms. Ann's house

Annabel and Derek

Derek, Linzy and Annabel at her church festival...

Pastor Rick, Annabel and Derek at Fall festival

Annabel and her Loma at their church festival

Annabel loving her Lanny at their fall festival

Annabel, Loma and Lanny

Wearing her costume to school for the day...

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!!

Favorite way to sleep...

Today is so much a better day...as you can tell she is actually resting well. For this I am so thankful...

Vesicostomy....

if you know anything or anybody who has experience with this could you please let me know...That is what sweet Annabel needs. She can't seem to stay well and is staying almost infected the entire time now. She has lost a pound in the last week and not wanting to eat. Nights are long as she is not comfortable. There is also possibly something going on around her surgery site that is causing much distention and she is in pain from this. She doesn't cry out with noise but today she just lay there on her quilt with tears rolling out the sides of her eyes.

A blessed mom...

I am sure in my earlier life if someone would have asked me if I would think I was blessed by having a special needs child, it would have been "NO!" I know that I have been blessed five times over with my wonderful children. That I do know! I have said many times over that Annabel has blessed my life in ways I couldn't have imagined. Anyone who is raising or has raised a special needs child will know that the day to day can be very hard. I count my blessings everyday that Annabel has a place to go. Her school is a wonderful, happy and safe environment that she is able to spend her day getting therapy, learning and BEING SO LOVED! Her teacher Ms. Ann, and the two aides Ms. Lisa and Ms. Alice are the most amazing people I know. Each and every day they do this over and over again. These people deserve a major recognition for their dedication to these children. Regina Howell Elementary School is this amazing safe haven that Annabel gets to retreat to each day and interact with children and adults of all ages. This year our school has been demolished to make room for a brand new school. Until the remodeling is complete, we are being housed in portable buildings. I have to say I was not looking forward to this school year because of the inconvience with a little farther drive, portable buildings, outside walkways, etc. I couldn't have been more wrong! They have taken and made this new site a very welcoming and safe area for our children. There is a very sweet lady in charge, Mrs. Rose Hardy the principal, who welcomes all with her gentle smile. She runs a tight ship and takes care of business. She has always made me feel like Annabel is the only child on campus, what mother wouldn't like this! It is wonderful to know that Annabel has visitors throughout the week that brighten up her day as well. I hear great stories when I pick Annabel up about her laughing and clapping when Mrs. Hardy sees her in the hall or how others have come to rock her on their breaks.

There is a program here called Parental Partners Awards Program where 27 principals nominate a parent from each of their schools to be honored. I was blessed to be one of the 27 parents honored today. What I really want to say is that IT IS MY HONOR to have been blessed to be Annabel's mother, and to have been lucky enough for my child to attend this wonderful school with the sweet teacher to love on my child each and every day. When Annabel was about to turn three and no longer be able to receive therapy from ECI, I was terrified of what to do next. After asking around for weeks to make the best choice possible for Annabel's next step, Regina Howell was the answer. Everyone explained how caring Mrs. Hardy and her staff were and so I went to visit. Ms. Ann eased my troubles and fell in love with Annabel at first site. From then on I knew that this was the best school for Annabel to attend. I appreciate all the hard work and effort that everyone puts in each day to help Annabel learn and grow into the person that she is today!!

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

Much goings on...

This week will be a fairly busy week and not what I would consider boring. You all know how I cherish my boring times.

Tyler, my 21yrs. old son will be leaving this week. We thought he would be leaving on Thursday and I tried to make all of our plans around this. I wanted to be here if he needed me for anything and also to try to spend anytime possible with him. Tonight we are going over to my parents for some roast,rice and gravy, fried okra, green bean cassarole, deviled eggs, corn and homemade chocolate pie. Yes, after we are done we will all feel like we do after eating a holiday dinner. Everyone will be there tonight except Tara, who went out of town for the holiday weekend.

Tomorrow we will travel to Houston to the Astro game. The soldiers are being honored in a short ceremony prior to the beginning of the game. Annabel will not be attending due to her not feeling so great and the noise level maybe too much.

Annabel has an appointment on Thursday for her ECHOcardiogram. Her pulmonary doctor asked that this be moved up instead of our scheduled time in mid-October. She will them need to wear a halter monitor for the next 24 hours. Our plans are to stay at Michele's (Annabel's milk mommy) Thursday evening and enjoy their beautiful home and wonderful company.

All this is subject to change if I can get the ECHO moved up due to needing to travel to Florida for Brianna's memorial service. When I looked Friday evening the flights were high but by the next day (withing the 7 day period) they had raise 200.00 per person. Yuck!

Annabel's sleep study showed that she needed to be on oxygen all the time she sleeps. There is no answer as to what we will do long term about the bi-pap. She just doesn't tolerate this well with all her secretions. She does well with her levels on oxygen, but last night we did have to raise the oxygen slightly. If I remove her during the nights her levels decrease into the 60's and 70's. She had done so well since the surgery. She is not having the spells during the day only at night, so that is good. She has developed a respiratory/cold so she really doesn't like the canula being placed in her nose. She is so good that if I tell her no-no, she just lays there looking at me pleading, please remove this from my face.

Our hope is that Annabel and I will travel to be with the Botts for their sweet Brianna's memorial service. Please keep this dear family in your prayers. I can't imagine how emotional this week will be leading up to the service.

Brianna receives her Angel Wings...

Brianna Botts has received her Angel wings today at 2:55 p.m. I cannot imagine what her family is feeling as they try to walk this road with arms so empty.

I am speechless. I seem confused, walking in a fog and seem to snap at anyone for no reason these last few days. I know my anger is not for lack of faith, I do believe. I do know she is in a much better place. My problem is just my selfishness and my lack of understanding. Understanding why this Trisomy thing is so ugly. I do know that these little ones are so full of joy, love, goodness and peace. I do know that their gifts are given by our sweet Jesus. I just don't understand why He calls them home so soon????

Alyssa's mom, Trish, wrote this beautiful piece that I have copied with her permission. God has truly given Trish a wonderful gift that shines so bright through her writing. It addresses so clearly the emotions and the journey we now travel with Trisomy 18. Alyssa's blog address is: www.wndrfllymde.blogspot.com

Right now I'm driving down the T18 highway in the backseat of a friends car...Brenda Botts. Gods at the wheel and Brenda along w/Bri (Jerry and Ashley) are alongside in the passenger seat. The view from the back is alittle obstructed but from back here the road feels hilly and narrow and it's hard to see where we're being led.

I'm feeling motion sickness and wondering how I can get comfortable. You can see this isn't the most comfortable ride for them as a family, but they are doing what they can to make the most out it. The Botts family, they are enjoying their togetherness. They are glad to have a trusty car, and a reliable driver. They're happy that they can focus on what's happening in the moment and allow their driver to worry about what is ahead. They aren't even wearing seat beats! Trusting that God will get them to their destination safely.

Me, here in the back.. I want to lean forward and strap them in. I want to ask the driver to slow down, or stop for bit so I can catch my breath. But I'm just along for the ride, a stow away waiting for the rise of the next hill, dreading the decline..wondering if there will be a clear view of what's ahead.

The Botts family have been kind in letting me stow away here in the backseat, they share bits of their front seat treasures with me. They share their morsels of food (encouragement) and fresh water (faith in a living God), even their medicine ( big doses of T18 reality) willingly. Being back here on this trip is helping me to prepare for when it's my(our) turn in the front seat.

How blessed I am that God is sustaining the Botts family so much so that they are willing to share their experience. How blessed are they to have such a loving and compassionate God. Brenda and her family are teaching me, and are examples of how God does work within. God is good. Even when the end is near He is good.

For anyone who wants to visit Brianna's blog, the address is: www.briannagiveshope.blogspot.com

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

Quietly say boring...

I am going to say boring very quietly. Annabel completed the last of the antibiotics that she was on last Saturday. She seems to be stronger, gaining a little bit and much more interactive. We have been off all therapy for a couple weeks, even though we still do things at home, like her stander and sitting. School will begin for my twins on Monday and then for Annabel the following Monday. My computer is not working well so this will be a very short post. Thank you to all for the continued prayers and concerns and well wishes for Annabel.

Here's hoping that all is boring and wonderful in your life!

Two blondies...

Colette and Carly... HAPPY BIRTHDAY TO YOU!!!

Unbelievable! Seventeen years ago yesterday these two tiny babies came into our lives. Having twins has its hard times but the GREAT times outweigh the bad. They are so close to each other and makes me so proud. I know you have heard me say it before, but I do believe I am so blessed and lucky to be their moms! This year is their Senior year and I know it will pass all too fast. In a blink of an eye we will be attending their high school graduation. Just remember girls we love you so much! I know everyone has heard the saying about twins being double trouble. Well I never once believed it, because ours were truly double blessings. I could not have had these two beautiful girls if it were not for the sacrifice that their birthparents made that very emotional day 17 years ago. I love them and thank them so much!

A very quick note to say that Annabel has had a good two days. She seems to have more energy and happy overall. She finish one antibiotic and the second will be done in about 2 more days. So maybe all this was tummy ache from the medicines. I am praying...

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.