Friday, December 26, 2008

Our Christmas Eve...



As I sit and watch the slide show of my precious family, I am reminded that God is totally in control of our lives. Twenty nine years ago as I was struggling with infertility and not being about to conceive, I could never have imagined the goodness that He had in store. No my life is not totally perfect in every way, but the blessings are HUGE! Six children I could not love more. They are beautiful, handsome and so darn cute. We have our normal ups and downs but they love so much!
As I watched the slide show I can read in all their faces how much love they have for Annabel. I could not ask more of my children in anyway.
My parents, sister and brother I am sure thought I was crazy when I was determined to raise another baby so late in life. I know that each one guarded their hearts so none would hurt when she passed early like we were told. But I am sure, this Christmas of the love and acceptance in all their faces. How Annabel loves them all.
I love my mom and dad so much for giving me the gift of love! I am so grateful for my sister and brother and their families.
As I count my blessing of my family, I also count them of my friends that are close and some that are so far away. Some I have met and other I have never met but feel I know so much! I continue to thank you for all the prayers offered up on Annabel's behalf, in her sickness and her health. Merry Christmas to all!

Tuesday, December 23, 2008

The Greatest Gift of All...

We are all so blessed with many things. But of course the greatest gift of all, is the most precious baby in the manger! Wanting to wish you all a very Merry Christmas!!!
All is well here and we are blessed to all be together for the holidays. Annabel has come down with another infection with two very rough nights. The doctor says we got it early and she has prescribe an antibiotic. At this time we are thankful for her g-tube as she hasn't wanted to eat for about 3 days. I am praying that tonight will be a good night and she will sleep tight!
Overall, Annabel is doing good and I know it is through God goodness that she is here today. I want to thank you for your year of faithful prayers. I am so blessed to have so many friends who love Annabel and know that we are keeping your family in our prayers.

Wednesday, December 17, 2008

Great therapy, new G-button, and true sacrifices...

Annabel continues to work so hard in her therapy (PT). Meg, her therapist is very pleased with Annabel's progress. Annabel goes for one hour three times weekly. She seems to remember what was done at the session prior so we don't have to repeat. Her muscles in her legs are stronger and her core/trunk seems to really be stronger.
Only just a couple weeks ago when Med placed Annabel in the walker each time she tried to move her leg forward for her, she would collapse, so therefore Meg used immobilizers on her legs. She was walking good distances with this. But this week Annabel hasn't needed the immobilizers and seems to be giving us help with picking one leg and moving it forward with much less help and no collapsing. She also walked with no walker and no immobilizers on her legs yesterday.
Her therapist also began working with Annabel in this 3 sides cage type contraption (Universal Exercise Unit) and she uses bungee cords strapped to a belt in her lower hip area. It frees her therapist hand up to work with Annabel and has Annabel controlling her trunk in an upright position. Just a couple weeks ago Annabel could not stand on one leg and in these pictures from yesterday she can now stand on one foot for a good period of time. She has also learned to squat down and then stand herself back up. Again, she is well and healthy and when this happens Annabel is a sponge that soaks up everything she is taught. She is such a hard worker and doesn't complain. Meg says this is very tiring on a child with such low muscle tone. I am so proud of this baby girl for her drive to improve.






NEW G-BUTTON...
Today Annabel had a small procedure in the day surgery at our local hospital. My friend Connie daughter Mallorie had hers replaced last week when she was hospitalized for a respiratory infection. She loves it and I went for a consult yesterday and Dr. H scheduled it for this morning. It is a combination of a mic-key button and Annabel's type called a Bard button. Since Annabel has received her Bard button it is very hard not to have spillage. Like the Mic-key that has a locking button, Annabel's type of button just comes out with little movement or if we accidentally hit it, the milk spills. It was suppose to be a simple procedure, but for some reason Annabel had more bleeding and seepage of something, not sure what. The doctor looks up at the nurse right after placing the new button and said to the nurse "What is all that?" I literally had to kneel on the floor trying not to faint. I have worked for oral surgeon and seen plenty of blood. This was on my baby and hearing the Dr. say what is all this (bloody mixture everywhere) made me weak. She did ok in the afternoon but tonight is very sore and uncomfortable. I am praying that in the morning she will be her happy self. Thank you for visiting and wish each one of you a Happy Holiday Season!





GUESS WHO CAME TO SEE ME AT THERAPY...TARA!!!!


SACRIFICES....
I was reminded by a sweet visitor on Annabel's blog named Penny (butterfliesandbananas.blogspot.com) who made a thought provoking post on her site and asked a great question for this time of the year. The question she closed with is this "Who do you know that has made a sacrifice???" Christmas always conjures up memories of children for me. I guess it all began with the birth of Christ, the baby in the manger! For whatever reason God chose for me not to be able to give birth. But He did choose to bring five wonderful ladies into my life. Tammy, Denise, Karen, Melissa, and Amanda made HUGE sacrifices for me to become the mother of my six beautiful children. No, I didn't know years ago going through fertility treatment and never experiencing a pregnancy that He had far greater plans for me. I will again say thank you for these selfless women who made the hugest sacrifice and these sacrifices continue to bless me each year!

Friday, December 12, 2008

You've come a long way baby...

Tonight I couldn't help but feeling so grateful for the progress Annabel is making. To others it may seem slow, but to us it means the world, for her and us. With Annabel it is a race to work when she is well. By work, I mean therapy. With these special little ones, you can make two steps forward and then you are hit with illness and you take 10 backwards.
As I sat her down by the tree tonight, I realised last year that she would not have been able to sit alone. This year I can actually move away from her and take a picture. She also showed an interest in the ornaments and also playing with the bow on the presents. At this point, Annabel is doing better than she has since the storm. I am truly praising God for the healing he has allowed Annabel at this point and praying for her during her winter months. Praying that she will stay as well as possible, that she will be able to control her secretions and stay as free of UTI issues as possible. Thank you for checking in!




Thursday, December 11, 2008

My very first snow....

Annabel woke up to a Winter Wonderland! I am sure you can tell from her cold little face she wasn't too keen on this white powder. My older children called and said get a picture of Annabel in the snow. I found a place in the shade and placed her little rocker there, bundled her up in two blankets and her little flannel gown. You can see this is not a happy face! We took the pictures very quickly then ran back in the house.
Some of you know that we had damage from the storm and Annabel, Carly and Colette, my twins, and myself moved to a new, smaller home right around the corner. We call this our little cottage! It looks so cute with the snow on the roof. As you can tell we am still in the process of putting up the decorations. One of the pictures is of our street. To us who never get to experience snow, we thought it was so wintery and beautiful.
School was not cancelled but was delayed. So Annabel did get to go to school for the day.






I LOVE MY SCHOOL SO MUCH...
I have always struggled with the idea of sending a sick little baby to school at such a young age. The fact is that she is fragile and nothing I do will change this. God has blessed us with so much more time than we imagined. When I first found out that school would be an option when she turned three years old, I thought absolutely NOT! We began to realize how much Annabel enjoyed other children and adults. She beams when anyone talks to her. She literally comes alive. I was told of this teacher at the school she attends and that if I could get her in this class, do it. Blessed doesn't begin to describe how I feel about this school and her class. The greatest gift to me is that I know when Annabel is at school she is LOVED. Mrs. Anne is her teacher, Ms. Lisa and Ms. Alice are the teachers aides. I have posted pictures of them prior to this post. The lady in the bottom picture is Mrs. Shan, who is also such a gift to this class. I have always know Shan in our community, but what I never knew is what a beautiful heart this lady has. She visits with Annabel when she is not there to substitute (she has two handsome boys at this same school), and then when one of the aides are out she is called upon. I am so grateful for each and everyone who has contact with Annabel. From the time I enter the doors of the school, the principal, vice principal, other teachers, the nurse, secretaries and therapist tell me about what she has done that day or how happy she has been. I have to be honest at my age, it is good to have a break to run errands or just clean my house while she is being well cared for. We are also so lucky that she has 3 very caring therapist, Ms. Linda, Ms. Dana, and Ms. Christy. So thank you to all who touch Annabel's precious little life.


Wednesday, December 10, 2008

Party girl...

Saturday was a day of Christmas Partying for Annabel. My son Tyler had his Christmas party for his unit in Pasadena. We boarded the RV early in the day for the trip to help set up and prepare for the Christmas Party. Annabel was so good just hanging out, taking her nap and then attending the Christmas Party with a visit from Santa!
The party was bittersweet for us due to the fact that if all goes as planned Tyler will be deployed before next Christmas.



Boarded the RV so that we could attend my Christmas party with my ACTS sisters. It began much earlier and we arrived at 10:15 p.m. I call these the die hards that kept things going until I arrived. These are some of the ladies that have prayed Annabel to be where she is today. They love her and she loves them. I think she smiled for two hours straight after arriving. It only took me about an hour to wind her down after arriving back home. Lisa thank you for hosting the party and to our social planner Denise, and of course to all the party goers. I hated that I missed so many by arriving late!

Does this look like incompatible with life??????









For those that aren't familar with her disease, Trisomy 18, the title of this post is the definition to what it means.

Monday, December 8, 2008

Update on Mallorie Rose...

I want to thank all for their prayers. Mallories fever is better, mainly dealing with repiratory issues and needing to be on an antibiotic. I know Connie and John appreciate your thoughts and prayers through this very stressful time.

Sunday, December 7, 2008

Prayers for Mallorie Rose...

Several of you know about Mallorie Rose. I received a call from Connie this morning saying she was really struggling to breathe. As a matter of fact, Connie said she was considering intubating her and I knew she was very sick. The next text I received was for prayers and that they were on the way to the ER, fever 106.2 (no typo here), and struggling to breathe. I sent out prayers to our Acts community but never got to get to my computer until tonight. I do know her fever did go down and that she was in a room with a diagnosis of pneumonia. Connie's family is such a faithful prayer warrior for her little blog babies, so please lift Mallorie Rose up in your thoughts and prayers. I don't know if Connie will have a chance to update, but the next call I get I will let you all know. Thank you in advance for you prayers.

Monday, December 1, 2008

She's back...


Let me begin by wishing everyone a Happy Thanksgiving! I know that through Annabel we can't help but remember how thankful we all are. God is so good and He brings such beautiful things through such innocent babies. Here Annabel is pictured with my sister, her Aunt Lira and my brother, uncle Carl.

Annabel has seemed to do well with the rest from the holiday. Each day she has seemed to have more energy and has taken a growth spurt. We are still taking the breast milk and I am so grateful to our milk mommies.

We have switched to a new pediatrician and when we weighed in her weight was 22.4oz. The last time about 3 weeks ago at the prior pediatrician she weighed 21.4. No I don't think she has gain a whole pound (I am sure their scales weigh differently) but I do know she has put on weight. She has also has a virus and so I was happy to see that she hasn't lost weight.

She is on very little oxygen as compared to the last month or so. Not sure if this is due to the move, weather changes or just Annabel! But the less stress is a welcomed relief.

This is such a brief update but there is a precious little girl with Trisomy 18 who is around 200 days or so. She is struggling and in need of everyones prayers. If when you read this you could just say a brief prayer for Zoe. Her blogsite is batisnsila.blogspot.com She has been doing very well prior to undergoing heart surgery and encountered an infection.

Again, as always thanks to everyone who visits Annabel site

Saturday, November 22, 2008

Sweet smiles...


Overall, I do think Annabel is better. Her spells have lessened for now. When they are happening it can be very scary but they don't seem as often. After my last post when I was hoping the breast milk had done some miracle things (poop) she was actually getting a virus(assumed). She began to run fever and then the diarrhea began. Sunday was the day she really felt bad. The medicine the pulmonary doctor prescribed to help her control her secretions works some as far as the secretions. Some of the side effects are that they will make the secretions too thick where she can't move them, also urinary retention (sure don't need any help in this area), and also slow her GI tract (it was already basically at a standstill). She was already on a low dose and today we have cut that in half. It helps with the runny nose (nasal area) but as far as the mucous in her chest, it totally turns it into a glue like substance. She can barely cough and it is so hard to get up. Occasionally, she would have some urine in her diaper during the night or if we couldn't cath her right on time, but since the meds. she doesn't have any wet diapers. Her urine output at ca thing has gone up about 80-100 cc. We have had to begin Miralax, breast milk and still no Bm's. We are having to help her in other ways. So everything seems to be a trade off.
The good thing is when the fever started her sats stayed in the normal range. Not sure if she has not been sleeping as deeply or what but now she only had a very few. That is huge news for me, as I am not nearly as stressed about get the sleep study right away.
Tonight we attended my aunt and uncle (godparents) 50th wedding anniversary. She has mutured so much. When she was little she could hardly stand to be out of my site. She went to everyone and made all smile. Of course tonight she was so happy. There was music which she loves and lots of picture taking. I didn't bring my camera but will get some and post soon of what a happy baby she was.
Praises here are that she seems to need much less oxygen, there seems to be a bit more of managing her secretions and tons more happy times than before.
If this had anything to do with her having some kind of reactive airway issue due to the storm, I am hoping the cool weather/rain has maybe washed or done away with some of the bad air. This would mean that Annabel is not experiencing anything permanent from the Trisomy itself.
Thank you to all who comment, visit her site, place calls, ask questions about her and offer prays on her behalf. Thank you to LaToya our nurse who has helped me to be able to be more consistent with her care. Thank you to our therapist, Meg and Carole, who continue to push Annabel and to put up with last minute cancellations due to her just not being able to make it. Thank you to my friends who offer me support, calling me to take me out making me feel normal and that I can have some bit of a social life, to my children who come over and love their little sister to her core. I know she bring them such joy, but they can't begin to imagine the joy they bring to her little life. God has blessed me with so much and I will pray he continues to give me the courage to make wise decisions and the strength to meet her daily needs.
P. S. by the way, she doesn't sleep with headband in her hair. We had been out and I had not removed it yet.

Friday, November 14, 2008

NO PICTURES PLEASE...

WARNING... This post is concerning Poop so you may want to just skip this one! Well, one of my other concerns with Annabel has been her very long term use of laxatives. Specifically, Miralax what she is taking now and has been for about a year and half if not longer. If you read the warnings it says not for children and also not to be on it longer than several days. Also, Annabel has been taking the adult dosage of this medicine for over a year. I have also been told by other moms that this is basically antifreeze. I have tried natural remedies, tons of prune juices and fruits, Activia w/prune, cereal with prune and other over the counter remedies. It has been brought to my attention the benefits of breast milk and all it could possibly do for her. We began using breast milk about 8 days ago and was still adding the Miralax but slowly weening her off. The last two days she has had no Miralax with the breast milk and today she had two beautiful loose diapers. You can thank our nurse from stopping me taking pictures of this historic event. Annabel never has diarrhea or loose stools. I am praying that this is one of the benefits of breast milk.
UPDATE ON POTTY TRAINING: While on this potty subject since Annabel has been sick with all her oxygen needs we have been lax on her potty chair activities. This week I decided to put her back on and immediately she did both her business right away and then proceeded to clap so happily for herself. So we have been putting her on the potty and then cathing her. Just wanted to let you know she has not lost this skill and we are so proud of this.
MAJOR THANK YOUS....these are for Connie who strongly told me about the benefits of breast milk and the good things that can come from this. (Being an adoptive mom, I never really research this for my older 5 children) She also helped me join Milkshare and navigate this site. She also shared a couple of her contacts. I hope these mommy's aren't offended if we call them Annabel's new milk mommies! They are Lyanna, Michele and Tamara. What a gift that these mothers are offering so my precious Angel can have a healthier, more natural nourishment for her fragile body. Annabel continues to bring me more blessings than I could have ever imagined.

Monday, November 10, 2008

Some improvement....




I am so thankful for the improvement that she is experiencing. It has brought much relief to her and myself. The spells seem to have decreased during the day, which required less oxygen use. YIPPEE!!! She is eating better by spoon and also taking her milk better. She is still having these these episodes during the night. She is dropping down to 50 some nights which scares me. As I have posted before they can do NOTHING until this sleep study is done. We were told almost 2 weeks ago that it would take two months for the study to be done. Well as of today I have heard nothing! So I called the nurse in the sleep lab and was told that it was never ordered or sent. So she now has to give to a dr. in the sleep lab to review (which takes 5 days, approx.) and then the soonest an appt. can be made is March, 2009! It is so hard for me to believe that in this huge city of Houston at this supposedly wonderful children's medical center that this is the earliest we can get an appt. I just cried when I was told this and was more than frustrated. Anyway, I just need to pray harder and will. I truly am praising God for the good days and the happier times that she is having. Thank you for continuing to read about our precious Annabel.

Thursday, November 6, 2008

Praises...

There are little signs of improvement. I hesitate to say at this point, but I am so grateful for anything that shows some relief for Annabel. She seemed to have more energy today and more playful times. The pulmonary dr. has given her some meds to help her manage her secretions. This should have made her sleepy but instead she woke at 1, 3 and 5 p.m. with smiles and playing pattycake. She never really experience those deep sleeps where she had those low desats. So I don't know if the meds energized her or if she just had a good day. Like I said I will praise God for any upswings. There is a downside to this medicine that we have to closely monitor. It can thicken her mucuos so that she will not be able to move it, also will lessen her urine output (risk of infections), and also slow her GI tract (not good for her already severe constipation). It will probably be a few days to see if this is making an impact. Thank you so much for your prayers.

Saturday, November 1, 2008

Garden Fairies...

Just a brief note to say that the email that was sent to me yesterday from a mom with a similar situation was so well received by the pulmonary doctor. I want to thank her from the bottom of my heart for not just reading and clicking off her blog. Thank you to her for taking the time to write in such detail what she has experienced. As I said I didn't come home from our appt. on Wed. feeling so good about the time it was going to take to find anything out. Within probably one hour after the doctor received the copy of the letter from this mom that I faxed, he called me. The nurse was so friendly and reassuring when I called and said she would give it right to him. He had to have read it, then he took the time to see her blog and then called. I felt he took so much time on the phone with me today and told me we would work together to help Annabel. He said this email from the mom all sounded so familiar to Annabel's issues. He explained so much in detail and actually said that he had said several of the same things just in different words. He even said maybe that the other dr. had used better wording. But today he was so reassuring that I feel very comfortable and excited to be on board with him. He also explained that he has treated trisomy patient before, that he is a pediatrician and is just beginning his pulmonary stint. He also said he was going to be open to any information that I would come across and then we could discuss it. I am thankful that God obviously knew I need this comfort. Along with stress, helpless is not a great feeling.
On a good note, the oxygen is helping Annabel through the night. She seems at this point to not be quite as tired the next day after a good nights sleep.
I am posting a few pics of our Garden Fairy! She can make any garden bright and colorful. We made one house for trick r treat and that was her teacher! When you seen Annabel come alive in her presence you know she has an amazing gift.