Thursday, May 28, 2009

The goings on....

Sorry for the lack of post but I think sometimes the stress takes it toll on me. Went to the dr. today and he believes I have shingles. I have not been feeling so great and that is hard for me to relax. The kids help me when they are playing with Annabel, but instead of relaxing I need to wash, clean, etc. I have not been resting with Annabel on the bi-pap and she was not able to clear this mucus thing up while on the bi-pap. It was as if she was trying to get the mucus out but the machine was pushing it down. She can not get the mask off herself and so there is the worry that she will choke, so I must tend to her every noise. I am convinced she breathes and sleeps better with it, but she was staying congested or her airway blocked. On Friday night I made the decision to just turn off the pulse ox and the bi-pap and see how she did. She slept and I slept and I noticed in the morning she was not coughing and choking on all the mucus. Therefore, I repeated it again Saturday night and again she was sounding so clear Sunday morning. Yesterday was our appointment with the pulmonologist to clear her for surgery and she was not making noise that I could hear. Of course, with the stethoscope he said she was noisy in her airway. He told me to keep doing what I was doing until the surgery since the coughing and breathing overall is better. He cleared her for surgery and I have been really at peace with my decision. She has had some really painful nights that she won't even allow us to hook up the tube to feed her. Her tummy is like an empty drum that sounds like it is full of air. So for this I am grateful that God has given me the confidence that the surgery is needed and has taken the choice out of my hands. We also saw her ENT on Tuesday in Houston (new dr.) and he suggested to remove her tonsils and adenoids for her airway issues. I was so glad the next day when we saw the pulmonologist that he addressed this issue and he agreed with me that the findings didn't support his thinking to remove the tonsils. I couldn't understand why the ENT thought this was necessary. He even said tonsils on children with airway issues is very hard for them. I was not for this surgery as we don't believe this to be a problem causing her airway issues. Again, God took that choice away when the pulmonary doctor said he wouldn't ok that procedure.

For anyone that has known Annabel for a while, she has been so healthy considering the trisomy 18. She has amazed many people along her path and done so well. This tummy issue is just a bump in her journey and I do believe she will be back to her old self soon after the surgery.

Some of the pictures below are with my family celebrating Tara's 25th birthday! Boy, am I getting old! The good thing about being my age is having wonderful children and being blessed six times over!

I have been following 3 precious little girls with Trisomy 18. Shane has gained her wings this past Saturday night. Her aunt contacted me soon after her birth. She and Shane's mother are so close and Shane's aunt had been through everything with the family. We talked a good while and then she passed some information along to Megan, Shane's mom. Then Megan and I began talking. What a beautiful loving family Shane has. They wanted to do everything they could for precious Shane. It broke my heart many times over when Megan could not get the medical help and support she needed. They are from Florida and sometime this happen, well most of the time this happens. This is becoming such a passion for me, to educated and show these people that some of these babies do survive and have such joy. Anyway, after struggling for two months and many request by Shane's mom to do scans, test and whatever, they found out she had no bile ducts. They also found she had many heart issues. It broke my heart that she had such little support from the medical community. Please, please pray for this beautiful family as they hold her services this Saturday morning. Megan was the kind of person that when you talked with her you felt as if you had know her for a very long time. She had such a gently, loving, sweet soul.

The other two little girls were both born on April 30th. One little girl is Lily and she is from Georgia. The second little girl is Annabel and they are from Texas. I have visited their blogs and exchanged comments and emails with their parents. They are in the very early stages of their journeys. I am going to put their links below and if you would like to visit and offer prayers for their families I know how much this is appreciated. Again, thank you for visiting Annabel's blog and being so faithful in offering your prayers. Also, I will be posting on her blog from the hospital as things unfold.



Ann said...

When I go to the address you gave for Sweet Anabel Leigh, I get a Mega Bible Study site and I don't know how to find information on this little girl. Can you help?

ANewKindOfPerfect said...

Cathy, I am glad you are at peace about the upcoming surgery. That always makes it easier!

As the previous comment says, the second site is a bible site? It looks intense!

Laurie in Ca. said...

Happy Birthday Tara. You are such a huge blessing to your mom!

Cathy, I will be praying for Annabel's upcoming surgeries and I am so glad you are getting clear direction in your decisions. Isn't God good? She sure looks happy in the pictures and her smile is just amazing:) Love you Cathy and I am sorry to hear about the shingles. I know stress is a big player in this. I am praying they clear up soon for you my friend.

Love and Hugs, Laurie

Jill Smith said...

Thank you, Cathy, for keeping Lily in your thoughts and prayers. I wish the best for Annabel. She has been such a source of inspiration, and you have been such a source of knowledge regarding T-18!

Jessica mommy to Alex/ RTS said...

And here I thought my rash was bad. Shingles has to be worse. It is so hard to take care of our little ones when we arent well. Im glad your girls help you. I cant wait till this surgery is over, and you can move on!

Anonymous said...

So sorry to hear you are under the weather, hope you are better soon. Please tell Tera Happy Birthday. Hugs and Kisses to Bel.
Love Susan

Cathy said...

A few of you commented on the sweet Annabel site. I had spelled blogspot wrong and so if you go back and copy and paste it should take you there. Let me know if it doesn't work. Thank you for bringing this to my attention.

May said...

I share your endless waking nights watching for her every sound for choking...know exactly what you're talking about! I'm sorry to hear about the shingles, are you on medication? Yeah there's so much to do around the house besides baby stuff. Glad you're going into the surgery at peace, looking forward to Annabel without her bowel issues.

Anonymous said...

Cathy, it is finally time that I write you... you do not know me... but I follow your blog.. I love your precious Anabel... I will pray for you I often do... that God will give you rest... help... a meal.. or someone to clean.... and that your body will heal and find rest... God Bless you dear siser.. Karen

The VW's said...

I'll be praying for you and Annabel! I've heard that shingles are very painful....I'm so sorry that you are having to deal with this too! Praying that Annabel's surgery goes well and that she heals fast and that it helps her to feel better soon! Your sweet girl is so adorable and such an inspiration!

Tamara said...

Sweet Friend, oh I am so sorry you have shingles! I had that back in HS and it was not fun. Will be praying for you!!!! I am so glad that you are a peace with your decision for surgery. Please keep us updated on when it is. So good to see our little angel smiling!!!! I love the photos!


Love ya!

Aimee said...

I am so sorry you have shingles. You really need to take care of yourself.

I am praying for you..and Annabel

laus said...

Hi Cathy,
You stopped by the other day and I wanted to do the same! Annabel is adorable, and such a source of hope for me. What a beautiful little girl ... I'll be praying for you and your family and I hope the surgery goes well. And feel better!


Kathy said...

Hi Cathy!

Please receive these doctor's orders: Have a quiet, restful weekend!

It doesn't matter if laundry isn't done, the house is dusty or needs vacuuming. What does matter is that you and Annabel be well and rested for her scheduled surgery.

Shingles is painful and very related to stress. It is also related to herpes and chicken pox so you may have been exposed but because of stress were unable to fight it off. So! Doctor's orders are rest, rest and relax! I know the Great Physician prescribes the same and He can give you that peace that you need. Rest in Him!

Thanks for updating. I truly do not know how you do all that you do.

Happy Birthday Tara!!! God bless you!!!

Kathy said...

Forgot to mention how proud of you and appreciative I am that you help, advice and educate other moms walking the same road. Your generosity is a beautiful gift to them.

You and Annabel offer light and hope in an otherwise overwhelming journey and teach us prayer warriors in the blogosphere how to pray. Thank you!

Karalyn said...

The picture of Annabel at the top of your post is absolutely beautiful!
I hope that feel better soon.

Karalyn said...

I hope that YOU feel better soon. I should have previewed my comment LOL.

Cathy said...

Just wanted to say thank you to all who have offered prayers and thank you for following Annabel's story. I have noticed some new names and I just wanted to tell them thank you so much. If you have I blog I try to go and leave you a note but if not I want to say thank you for taking your time to visit Annabel and the sweet things you say and the prayers you say on her behalf. Now all of you go have a wonderful weekend.

May said...

Vera's not doing good for many nights now with the mucus stuck in her airway. She chokes on the thick mucus and struggles to cough it out. We haven't been able to fix the mini me mask on either. She awakens every night at 4am cos that's when the mucus really builds up. Saline sprays don't help much now. So frustrating!

Kathy said...

Just checking in, Cathy! Hope you are feeling better.

I totally agree with Karalyn that Annabel's picture with the gossamer hair bow and sweet pink gown is so beautiful.


Colleen said...

Hang in there Cathy. Your doing what needs to be done.

We're sending good thoughts and prayers from Illinois that all will be well.

~Colleen, momma to angel Rowan Margaret and Laurel Eliza.

Anonymous said...

[color=red]The Most Affordable XRUMER/BACKLINK SERVICE Online!
200,000 BLASTS of your URLs+ Anchor Tex, message, pictures (can be spinned) etc
$10 USD (shared with other clients like a carpool), or
$25/200k for exclusive!(you control EVERYTHING)
$50 Exclusive @ 500,000 blasts.
(Complete reports will be given to clients)

For orders, questions or concerns? Email: [u]formless.void47 at [/u]
1. For STRICT Whitehat sites, it is advised to create buffers to pass on linkjuice. i.e. social bookmarks, cloaked pages etc.
You can blast the site directly, but it entails risk.
Using buffers are 100% safe, speaking from experience.
2. Xrumer is a very technical tool. Just describe to me what sorts of effects you want and well make it happen!
If you want to buy Xrumer?
>>>>> <<<<<<

online seo training seo provider bangalore buy d link wireless router seo qualifications text link seo blogging software buy link ads black seo site promotion seo surrey dc seo seo design solutions bay area seo xrumer 4 seo stuff seo sales shenzhen seo seo gurgaon bad seo long tail seo seo validator seo directory list inexpensive seo seo pay per click seo advisor buy domain link seo press release seo elite training seo sheffield seo firm uk mambo seo seo devon cheap seo services india seo friendly shopping cart seo chandigarh reciprocal linking corporate seo seo articles buy wifi link search engine optimization how to seo optimization expert seo training canada latest seo link building cheap seo email seo oxford seo manchester freelance seo writer seo reseller india

[url=]does milk help you grow taller[/url]

[url=]meaning of herpes herpes forum rectal herpes[/url] Buy Diablo Smoke reviews Buy Afganish reviews Van Goghs Blend


[url=]grow taller articles[/url]

[url=]bob penis enhancement[/url] [url=]72 inch plasma tv[/url]

[url=]Belarus website Long Beach information Fiji teeth whi6tening dutch fork south carolina teeth whitening evansville indiana teeth whitening Gwynedd pawtucket rhode island teeth whitening[/url]

[url=]Cheap Xrumer Service[/url]
[url=]Cheapest Xrumer Service[/url]
[url=]Best Xrumer Service[/url]
-------- A Ugobe Life Form Pleo Auction Pleo Best Pleo Dinosaur A Ugobe Life Form Pleo Dinosaur Price [url=]dish tv hd dvr[/url]

[url=]buy acai berry 500[/url]