109082
It is a big challenge to have a special child. She looks wonderful and bright for just getting out of the hospital. Love the pink color on her wheelchair. Continued prayers and blessings for her ongoing health improvements.
89895Happy to hear she is home and safe!
I too, have a "special" son. whom brings us his own unique way of making us happy, by laughing at the least little thing. He is 30 yrs old and loves baloons.
7875I'm sorry I missed your post til now....I see God knew who to give this sweet child to.....God is so awesome!!!
8647So sorry to read about this. Be strong and we are all thinking of your and this precious little girl
18960What a lovely little girl. I hope she continues to get stronger and stronger. My thoughts are with you and your family. Hugs Sarah.
by toogie
04 Jun 2011
I went again this morning,and stayed with her for about 4 hours. She awoke very happy about an hour after I got there. She is usually always in a good mood. She is getting her strength back, thank you-Toogie
253108She is beautiful! Grandma's are allowed to call you baby girl forever as long as you let her know that you know she is growing up into such a beautiful young lady. Bless you and her!
by toogie
03 Jun 2011
I will tell you how she is growing up. Yesterday, I left her in her bed just long enough to get her wheelchair out of my car and I came in and heard her giggling. When I reached her room, she had squirmed around and was hanging half way out of the bed. Thank goodness it was her lower half! and she has rails!! She must have liked doing it cause she was tickled.
33579Thank you ALL for your prayers, kind words, and experiences.I haven't been on again as I have had to go stay with our 'Baby Girl'. She is doing so well, thanks for answered prayers.The Dr.said that b/c she doesn't like to drink well, that she wasn't getting enough fluids, each day, to flush her daily meds out of her system.He called it a drug interaction, which really was equivlent to a drug overdose. he said WE didn't overdose her (she is only on one-half the dosage she could be taking for her age and weight) but there was a build up b/c she has trouble with constipation and excretions so she would retain her meds until it was too much for her. Thank God, my daughter had the sense of mind to preform CPR until Rescue came. We were afraid to bring her home b/c how would we know when there was a build up again? The solution (we hope) was to put her a feeding tube, so that we can assure that she is getting the liquilds that she needs, thereby flushing her system of daily meds. and also helping with the bowel movements. The Drs had suggested a feeding tube before, b/c she is thin, but we never realised it would help with the meds.B/c my d had twin-to twin transfusion syndrome and they were born @ 27 weeks, instead of the 40, we knew there would be nuro. problems. Her primary dissability is perventicularlucomalisia, PVL for short,cerebal pasley,eplepsy, and legally blind. I say 'legally blind' b/c as of the last year she is seeing shadow and light.She still cannot focus on an object, but she sometimes notices when there is a movement. She will improve, I am sure, b/c He says, to ask believing, and He knows WE have been asking! All glory goes to HIM and I sure do/ will broadcast it!!ha ha I will try to post a photo that I took yesterday of her in her room. She is so precious (of course I am the judge and jury, ha ha)
by stitchship
04 Jun 2011
She is a sweetheart! May the Lord heal whatever needs healing so that she can focus clearly on everything!
109082Praise the Lord for her healing. I will keep you all in my prayers. Hugs
by toogie
03 Jun 2011
I will forever sing Praises, and we do appreciate the prayers. thank you-Toogie
12821Praise God for this healing hand one more time hugs and love in Jesus carolyn
360438God bless her and all your family, I am glad she is doing fine.
by toogie
03 Jun 2011
She has come a long way, from her 1 pound 11 ounces at birth! She is doing so good since we came home 2 days ago. Thanks for the blessing,Toogie
26714This must have been frightening, but I am so glad that it turned out to be OK. I join you in thanking our Lord. Angie
by toogie
03 Jun 2011
Angie, I never want to be that afraid again. We live about 8 miles from them and we got there b/4 the land ambulance, the helicopter was circling overhead, searching for a place to land. I do thank the Lord and all the EMT's and my daughter.I also would like to thank the young book salesman, whoever he is, for coming so late that night to sell books.Normally, she would have eaten, taken her meds and they would have put her to bed, where she would have fallen asleep. However God has a way of using us in all His plans. B/c He placed this college kid there at that time, my son-in law kept holding Avery and that is when she stopped breathing. Had he taken her to bed, she would have died in her sleep.(My daughter is a PTA and they had a patient that did exactly that. It was the week of her 4th b-day and when her mom went in to check on her b/4 she went to bed, Molly had died, just that quick) Can anyone say,"There is no God?" when you just have to see His work. That guy was there, unknowingly, for a better reason than book sales. We had completely forgotten about him, until days later, we ask, What happened to the book salesman? ha! Ha!-Toogie
109763Praise God! My prayers are with you and the family. It seems that God has touched all of you.
Hugs,
Jacqueline
70914Toogie, I am so glad everything went well and you were able
to bring her home! I know all too well the stress of which you went through. You can see my oldest of three daughters, Cindy, along side me in my avatar (picture) who was born with Downs Syndrone and a major heart defect. She is now age 45, and the doctors told us she would most likely not live to be grown without open heart surgery at age 7. The doctors explained that there was a 50/50 chance that she would not make it through the surgery. That was a tough time for me, but I knew we really had no choice, if we wanted her to survive. She came through it, and was up and running less than two weeks later! She came off all heart meds a year later, and still today is free of meds. Cindy is our "special" gift, and has been such a blessing to our entire family. As you stated, "she
gives so much love", and is "happy and sweet"; this is so
true of all these "special angels"! May the Lord bless you all each day. Give your Baby Girl a hug from me!
Angel
by toogie
03 Jun 2011
Angel, I love seeing you and Cindy together. I bet Cindy is a sweet young lady. I have been working with the sp.needs children for over 20 years now. We have a 12 yr old Downs on our bus that loves to joke with us. She makes us laugh.They are so loving and kind. She always plays with my g/daughter, and when Avery Claire is sick, she ask about her.Jessica is her name and like Cindy, she has had to have heart surgery. Is this something associated with Downs kids?I wish the best for all of you,Toogie
12500You are so blessed to have her in your lives and she is blessed to have you there taking care of her, praying for her and loving her. I was a special ed. teacher for my career and understand the love, the joy and the blessings that God's chidren give to us. I am glad she came home to her beloved family.
by toogie
03 Jun 2011
Thank you so much for your kind words. I have worked also, for over20 years with kids like Avery. They make us appreciate so much!-Toogie
168969Toogie, God bless you all and I will keep you and your family in my prayers.
Hugs and lots of love Sue D. Ohio
by toogie
04 Jun 2011
Thank you, Sue D. We can always use more prayer. I pray for God to make her whole ONLY if she will grow up to serve Him. He says if we ask in His name, so I keep asking! If it is not in His plan, He will tell me why one day, but I still ask. I know He has the power. And IF He doesn't make her whole on this earth,(HE will 1 day) we will continue to care for her the best we can.She feels our love.-Toogie
2718Oh my toogie - my heart dropped - so happy to hear that you were able to bring her home today - it is a blessing to have such a child in your life - I have a friend that has shown me in many ways through the years - how blessed they were to have their lovely daughter for 21 years. I will be praying for you and the family.
by toogie
04 Jun 2011
Thank you, Shirlene. Could this be our identical twin girls, Isabella and Avery? We have only to look at Avery to know what Isabella looks like in heaven.Thank you so much,Toogie
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