Mya with her physical therapist Vicki! 
Climbing up the stairs at therapy!
And she's off!Mya walking to Vicki for her last therapy appointment!
Tuesday, August 25, 2009
No more physical therapy!
Mya had her last physical therapy session today! She walked right through the doors!!! Vicki has been so great to work with over the last 7 months! Mya is physically doing everything age appropriate at this point so we don't see a need to continue physical therapy at this point! Vicki is always a phone call away if I have any questions so I feel relief in that! What a great accomplishment for Mya today!!
Things are also going extremely well with the new feeding plan! We are giving her 2 ounces of formula within about 10 minutes through a syringe and then waiting 50-60 minutes and giving her the other 2 ounces within about 10 minutes! It is working out wonderfully! She is not hooked up to a feeding tube for an hour at a time during the day anymore!!! (We are still using the pump for her midnight feeding) We then are waiting the 2 hours and then start the process over!
What a change it has made for me and Mya during our day! I don't feel like I spend half my day chasing a one year old around with a tube attached to her!!! I can't even express to you how happy Matt and I are about the change! Her GI doctor in Cincinnati is awesome and was so encouraging! He said we made his day last week when we were there! We are very gradually going to increase the first part of the tube feeding to hopefully one day get the entire feeding done within about 20 minutes. After about another month we are going to switch her to either whole milk or pediasure depending on how she is doing. The GI doctor wants to make sure she tolerates the bolus feedings really well before we switch up the milk on her.
Wow!!! I feel like I am almost living a normal life again! We still have our work cut out for us as far as Mya drinking. She still only wants a few sips a day but I feel with time she will drink!
We are heading to Florida this Sunday for a few days with my sister Becky, her husband Tim, their two children Emma & Timmy, and my parents! It should be a fun and relaxing time! We need a little family time before Matt gets in the field for harvest! Hope everyone has a great rest of the week!
Things are also going extremely well with the new feeding plan! We are giving her 2 ounces of formula within about 10 minutes through a syringe and then waiting 50-60 minutes and giving her the other 2 ounces within about 10 minutes! It is working out wonderfully! She is not hooked up to a feeding tube for an hour at a time during the day anymore!!! (We are still using the pump for her midnight feeding) We then are waiting the 2 hours and then start the process over!
What a change it has made for me and Mya during our day! I don't feel like I spend half my day chasing a one year old around with a tube attached to her!!! I can't even express to you how happy Matt and I are about the change! Her GI doctor in Cincinnati is awesome and was so encouraging! He said we made his day last week when we were there! We are very gradually going to increase the first part of the tube feeding to hopefully one day get the entire feeding done within about 20 minutes. After about another month we are going to switch her to either whole milk or pediasure depending on how she is doing. The GI doctor wants to make sure she tolerates the bolus feedings really well before we switch up the milk on her.
Wow!!! I feel like I am almost living a normal life again! We still have our work cut out for us as far as Mya drinking. She still only wants a few sips a day but I feel with time she will drink!
We are heading to Florida this Sunday for a few days with my sister Becky, her husband Tim, their two children Emma & Timmy, and my parents! It should be a fun and relaxing time! We need a little family time before Matt gets in the field for harvest! Hope everyone has a great rest of the week!
Saturday, August 22, 2009
Negative!
Mya's tests from Cincinnati came back negative! She is not allergic to soy, milk, wheat, eggs, or peanuts! Which is great!!! Her emptying scan came back normal also! I think our child is going to remain a mystery and she is just going to slowly but surely get better on her own!!
Sorry it took a couple extra days for me to blog....the day before we left for Cinci my grandmother passed away. We made it home on Thursday just in time for her viewing to start! It has been a crazy few days but she is now resting peacefully in heaven!
We trying a new feeding plan with Mya which knock on wood is going well since we have been home! We have had only one vomiting episode!! I feel like things really are looking up!! Mya now has four teeth and is walking all over the place (sometimes with quite a few falls but she keeps on truckin)!!!
My goal for her was to have her walk into her next physical therapy appointment and we go in a few days! So yay...she accomplished her goal! Thanks again for all the thoughts and prayers!
I will update later this week about how her new feeding plan is going!
Sorry it took a couple extra days for me to blog....the day before we left for Cinci my grandmother passed away. We made it home on Thursday just in time for her viewing to start! It has been a crazy few days but she is now resting peacefully in heaven!
We trying a new feeding plan with Mya which knock on wood is going well since we have been home! We have had only one vomiting episode!! I feel like things really are looking up!! Mya now has four teeth and is walking all over the place (sometimes with quite a few falls but she keeps on truckin)!!!
My goal for her was to have her walk into her next physical therapy appointment and we go in a few days! So yay...she accomplished her goal! Thanks again for all the thoughts and prayers!
I will update later this week about how her new feeding plan is going!
Monday, August 17, 2009
Lake Trip!
We had a great time this week with the Robert's family at Lake Cumberland! We were in desperate need of some relaxation! We leave tomorrow evening for Cincinnati and will be home on Thursday late afternoon. They are doing a stomach emptying scan and allergy tests on Wednesday and we meet with all the doctors on Thursday morning. Wish us luck!!!! We will finally find out if she has food allergies! They will also be deciding what kind of milk to start her on during these appointments!
Mya's G-tube came out for the first time in the middle of the night this past evening! I was so tired Matt kept trying to wake me up! He just kept saying.....Amanda, Mya's tube came out....Mya's tube came out!!! We actually did pretty well and were able to get the spare in without problems! I was pretty proud of the two of us! We were told over and over to call the hospital if this happened to notify the surgeon so after being on hold for almost an hour we finally got the okay to go ahead and feed her like we normally would and to just keep an extra eye on her belly and G-tube site!
Mya's G-tube came out for the first time in the middle of the night this past evening! I was so tired Matt kept trying to wake me up! He just kept saying.....Amanda, Mya's tube came out....Mya's tube came out!!! We actually did pretty well and were able to get the spare in without problems! I was pretty proud of the two of us! We were told over and over to call the hospital if this happened to notify the surgeon so after being on hold for almost an hour we finally got the okay to go ahead and feed her like we normally would and to just keep an extra eye on her belly and G-tube site!
Wednesday, August 12, 2009
Nothing much has changed around here!! Which is always a good thing!! Mya finally has another bottom tooth and a top tooth that has broke through! Thank goodness! I thought she was only going to have one tooth forever! haha!
I would say she is offically walking now! She still crawls some...but is definately walking more than crawling now! She is into everything which Daddy just gets a bang out of!!! She is also saying a ton of words or at least her version of words! Ball, book, balloon, meow, bye-bye, hi, mama, dada, papa, baa, and we have even taught her what a tractor says!!
We have had a few more vomiting episodes within the last few days with the formula which has been discouraging but it's nothing like what it used to be! Thank goodness! We leave next Tuesday night for Cincinnati and will come back late afternoon on Thursday. We will finally find out if she has food allergies for sure and they are repeating her stomach emptying scan. We also meet the doctors to review all her tests results and hopefully get her granulation tissue taken care of. They are also going to decide what kind of milk to start her on based on the allergy tests. (She is still on a non-milk based hypoallergenic formula)
But for this weekend we are heading to Lake Cumberland with some friends to enjoy some relaxation time!! Much needed for the entire family! I'm excited to get away for a few days!
I would say she is offically walking now! She still crawls some...but is definately walking more than crawling now! She is into everything which Daddy just gets a bang out of!!! She is also saying a ton of words or at least her version of words! Ball, book, balloon, meow, bye-bye, hi, mama, dada, papa, baa, and we have even taught her what a tractor says!!
We have had a few more vomiting episodes within the last few days with the formula which has been discouraging but it's nothing like what it used to be! Thank goodness! We leave next Tuesday night for Cincinnati and will come back late afternoon on Thursday. We will finally find out if she has food allergies for sure and they are repeating her stomach emptying scan. We also meet the doctors to review all her tests results and hopefully get her granulation tissue taken care of. They are also going to decide what kind of milk to start her on based on the allergy tests. (She is still on a non-milk based hypoallergenic formula)
But for this weekend we are heading to Lake Cumberland with some friends to enjoy some relaxation time!! Much needed for the entire family! I'm excited to get away for a few days!
Wednesday, August 5, 2009
19 POUNDS!!!
WOOHOO!!! She finally made it to 19 pounds!!! Mya had her 12 month appointment today and it went pretty well! She is a healthy, but tiny one year old!
Sometimes when I think about the day she was born it just brings tears to my eyes! For those of you that know the story I'm sure it gives you a good laugh! My husband had several cement trucks coming to the house that day and he had a hard time believing me that I was really in labor 3 weeks before my due date! But being an OB nurse you would have thought he would take my word for it! haha!
We have been cutting back on some of the therapy appointments in Indianapolis. Every week making at least one trip to Indy was wearing me and Mya out! We are starting to go just once per month and have Penny come to our home every 2 weeks! Her physical therapy is also just once per month now! I feel like I have some of my life back! Colleen in Indy is definitely worth the trip and we have sooo much gratitude for all her help. She has really been the driving force for me to get Mya where she is today! She is just a phone call away and seeing her once per month will give us enough time in between appointments to work on the skills we learn!
Mya had a great 1st Birthday party on Sunday! All her little friends were there to help her celebrate as well! We have such a great group of friends and wonderful family members that have been there for us! Hope everyone has a great rest of the week!
Sometimes when I think about the day she was born it just brings tears to my eyes! For those of you that know the story I'm sure it gives you a good laugh! My husband had several cement trucks coming to the house that day and he had a hard time believing me that I was really in labor 3 weeks before my due date! But being an OB nurse you would have thought he would take my word for it! haha!
We have been cutting back on some of the therapy appointments in Indianapolis. Every week making at least one trip to Indy was wearing me and Mya out! We are starting to go just once per month and have Penny come to our home every 2 weeks! Her physical therapy is also just once per month now! I feel like I have some of my life back! Colleen in Indy is definitely worth the trip and we have sooo much gratitude for all her help. She has really been the driving force for me to get Mya where she is today! She is just a phone call away and seeing her once per month will give us enough time in between appointments to work on the skills we learn!
Mya had a great 1st Birthday party on Sunday! All her little friends were there to help her celebrate as well! We have such a great group of friends and wonderful family members that have been there for us! Hope everyone has a great rest of the week!
Tuesday, August 4, 2009
Saturday, August 1, 2009
Nothing but good things to say!
Mya has added a ton of new foods to her diet! We are gradually trying new things. Peas, pears, lunch meat, ravioli, kidney beans, gold fish crackers, macaroni and cheese, toast, and the list goes on! She is doing a great job with eating! She doesn't eat the quantity that a child her age should.....but we are working on it!!
She finger feeds herself, but will also now let me feed her with a fork! She never used to let us feed her with utensils so that is a great improvement.
She has had a couple of vomiting episodes while eating but we are quickly learning what foods she tolerated and what foods she doesn't! I couldn't be more proud of her!!!!
Over the last 2 months Mya has drank about an ounce of milk from her cup 4 different times now! She is very hot and cold with drinking. Some days she will not drink anything and others she will take a few sips with each meal. I have confidence that she WILL drink her entire amount one day!
I feel like things are finally looking up! I know we will have good days and bad days...but for once I feel like the good days are out numbering the bad! We go for her 12 month doctor's appointment this week so hopefully we get some good news on her weight. We went for a weight check about 2 weeks ago and she was still 18lbs. 9oz. (Which was the exact same as when she was 9 months old)
She is not walking yet.....but takes several steps at a time. She has learned how to maneuver through the house walking along the walls, couches, chairs, etc. Life would be so much easier if she would just walk! haha! She is doing really well considering all the trauma she has been through.
We are having her Birthday party tomorrow here in the shop so I will post some pictures afterward! I think we went a little over board....but honestly Matt and I want to celebrate her progress and just be happy for all the love and support all our friends and family have given us!!! Although the last year has been tough we are stronger for it and we couldn't have gotten through it without all our family and friends!!!!
She finger feeds herself, but will also now let me feed her with a fork! She never used to let us feed her with utensils so that is a great improvement.
She has had a couple of vomiting episodes while eating but we are quickly learning what foods she tolerated and what foods she doesn't! I couldn't be more proud of her!!!!
Over the last 2 months Mya has drank about an ounce of milk from her cup 4 different times now! She is very hot and cold with drinking. Some days she will not drink anything and others she will take a few sips with each meal. I have confidence that she WILL drink her entire amount one day!
I feel like things are finally looking up! I know we will have good days and bad days...but for once I feel like the good days are out numbering the bad! We go for her 12 month doctor's appointment this week so hopefully we get some good news on her weight. We went for a weight check about 2 weeks ago and she was still 18lbs. 9oz. (Which was the exact same as when she was 9 months old)
She is not walking yet.....but takes several steps at a time. She has learned how to maneuver through the house walking along the walls, couches, chairs, etc. Life would be so much easier if she would just walk! haha! She is doing really well considering all the trauma she has been through.
We are having her Birthday party tomorrow here in the shop so I will post some pictures afterward! I think we went a little over board....but honestly Matt and I want to celebrate her progress and just be happy for all the love and support all our friends and family have given us!!! Although the last year has been tough we are stronger for it and we couldn't have gotten through it without all our family and friends!!!!
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