Look How Big Jonah is getting!!!
5/2/12 By: Amy Pitts, Mother
Jonah had a good night last night. He is up to 7lbs 4ozs! Sunday afternoon/night he threw up 6 times! Reason, they tried to up his dosage to 20 ml/hr. Last night he only threw up 1 time. Big difference! Emily Kellner came over yesterday and made us a wonderful ravioli dish, ate dinner with us and then helped watch Jonah while I gave Lily a bath (Linn had to give his final exam at CFC last night). Tonight, my cousin Cori Lee is ordering us some Chinese Food. Lily LOVES it! Heading to Babies R Us to buy her a bumper so she doesn't fall out of the daybed tonight :)
Note To all Supporters, From Cori....
Dinner for the Jonah...and his family
Please contact me (pinkskirtproductions@yahoo.com)if you are wanting to contribute any dinners to Amy, Linn, Lily and Jonah. I will give you all the details on how to schedule a day and for those who may live out of town... it is still possible to contribute...
just send me an e-mail...
Thank you kindly,
Cori, Cousin
5/2/12 By: Amy Pitts, Mother
What an exhausting day! We had a successful day at MUSC, but we didn't leave until almost 5pm. The cardiologist is pleased with his stats and weight gain. The ENT feels we may have to wait a little longer on fixing his cleft palate because he has a little overbite. The concern is if they fix it and his mouth is not big enough, he may have difficulty breathing. He will monitor him as we go, but we will possibly not have that surgery until March now when compared to December (sounds good to me!). The speech pathologist is glad that we are working on oral feeding as much as possible with him being on continuous feeds. The plastic surgeon just popped in to look at the structure of his face/skull and feels that everything is good. Jonah was 7 lbs 6 ounces today :)
5/6/12 By: Amy Pitts, Mother
7 lbs 8 ounces! Jonah is doing fairly well. He threw up around 8pm (alot), but has only thrown up twice in two days. The physicians are pleased if he only throws up once a day. His feed has increased to 20 ml/hr. Because of the increase, this may be causing him to throw up. It may take his stomach a little time to stretch for the additional intake. We took a trip to my nephew's Christening today. Luckily he slept the whole car ride! Lily would never have slept.....she would have SCREAMED at his age :) It is crazy to see how different they are size wise, and only a few days apart. Jonah will catch up eventually. I am just so glad he is "plumping" up. A coworker, Margaret Day, brought over an amazing dinner Saturday night. Thanks Margaret! The meatloaf was awesome!! Thanks everyone again for your help during this time.
5/7/12 By: Amy Pitts, Mother
Yesterday was an eventful day. Jonah and I went to "BabyNet" to see if he would qualify for speech, physical therapy and occupational therapy (through SC early intervention). The lady that helped register us felt that we would more than likely qualify. He was very uncomfortable during the visit, and almost cried the whole time :( Hopefully we will qualify. Fortunately, Mandy Burgess Bailey is going to be a huge help in this process. With my special education background and her personal knowledge/experience, Jonah should be "good to go". Later yesterday afternoon, Katherine Haygood Owens brought by an awesome pasta salad, bread and brownies. YUM! Kathy helped me finish grad school with an awesome in-classroom experience. It is amazing that God had prepared me for the road I am on now. Special Education background.....now using it personally.
5/8/12 By: Amy Pitts, Mother
Today he did pretty well overall. 7 lbs 10 ozs !!!! He is definitely bulking up. Emily Kellner got to stop by with her mom and Logan. Lily got to play with him while the "girls" got to watch Jonah and Ethan sleep. Luckily Jonah has only thrown up about once a day now. The farrell valve has done wonders. This afternoon, our awesome neighbors Jeff and Shirl Salata brought over an amazing spaghetti dinner with cannolis for dessert. Thanks guys!
What an exhausting day! We had a successful day at MUSC, but we didn't leave until almost 5pm. The cardiologist is pleased with his stats and weight gain. The ENT feels we may have to wait a little longer on fixing his cleft palate because he has a little overbite. The concern is if they fix it and his mouth is not big enough, he may have difficulty breathing. He will monitor him as we go, but we will possibly not have that surgery until March now when compared to December (sounds good to me!). The speech pathologist is glad that we are working on oral feeding as much as possible with him being on continuous feeds. The plastic surgeon just popped in to look at the structure of his face/skull and feels that everything is good. Jonah was 7 lbs 6 ounces today :)
5/6/12 By: Amy Pitts, Mother
7 lbs 8 ounces! Jonah is doing fairly well. He threw up around 8pm (alot), but has only thrown up twice in two days. The physicians are pleased if he only throws up once a day. His feed has increased to 20 ml/hr. Because of the increase, this may be causing him to throw up. It may take his stomach a little time to stretch for the additional intake. We took a trip to my nephew's Christening today. Luckily he slept the whole car ride! Lily would never have slept.....she would have SCREAMED at his age :) It is crazy to see how different they are size wise, and only a few days apart. Jonah will catch up eventually. I am just so glad he is "plumping" up. A coworker, Margaret Day, brought over an amazing dinner Saturday night. Thanks Margaret! The meatloaf was awesome!! Thanks everyone again for your help during this time.
5/7/12 By: Amy Pitts, Mother
Yesterday was an eventful day. Jonah and I went to "BabyNet" to see if he would qualify for speech, physical therapy and occupational therapy (through SC early intervention). The lady that helped register us felt that we would more than likely qualify. He was very uncomfortable during the visit, and almost cried the whole time :( Hopefully we will qualify. Fortunately, Mandy Burgess Bailey is going to be a huge help in this process. With my special education background and her personal knowledge/experience, Jonah should be "good to go". Later yesterday afternoon, Katherine Haygood Owens brought by an awesome pasta salad, bread and brownies. YUM! Kathy helped me finish grad school with an awesome in-classroom experience. It is amazing that God had prepared me for the road I am on now. Special Education background.....now using it personally.
5/8/12 By: Amy Pitts, Mother
Today he did pretty well overall. 7 lbs 10 ozs !!!! He is definitely bulking up. Emily Kellner got to stop by with her mom and Logan. Lily got to play with him while the "girls" got to watch Jonah and Ethan sleep. Luckily Jonah has only thrown up about once a day now. The farrell valve has done wonders. This afternoon, our awesome neighbors Jeff and Shirl Salata brought over an amazing spaghetti dinner with cannolis for dessert. Thanks guys!
I had a few moments where Jonah is peaceful and Linn is giving Lily a bath. I wanted to share my sincere appreciation to my coworkers at Beech Hill Elementary School. You have been extremely supportive during this difficult time and have been a constant in our ever changing household. In particular, thank you to Stefanie Sirbas, Sims Anderson Plunkett, Elizabeth Stone andJennifer Blanton Bates. You have definitely helped more than I could have imagined! I am sorry I haven't been there as much as I would have liked, however know that I appreciate all you are doing for us.
5/9/12 By: Amy Pitts, Mother
Jonah is 7 lbs 11 ounces today! He slept the majority of yesterday, not sure if he was just growing or if it was the icky weather. My parents came down to help us organize a bit and Janie Janie Lancaster Smith brought over an amazing chicken pot pie and tiramisu from Our Daily Bread. Today is his up MUCH more! He is very active and I am happy for that. Rachel Thames Walker brought over a great lunch including my favorite.....corn! Thanks everyone :)
5/10/12 By: Amy Pitts, Mother
God is good! I knew Jonah was starting to run low on the prescription formula I have to add to my milk. I called the delivery company Monday morning, and they said they couldn't get it to us until Friday afternoon. I knew I wouldn't have enough. I forgot his pediatrician had mentioned to see if there were any samples last time we went for an appointment. I called the pediatrician's office, and sure enough! They were able to give me two small cans (that equal one big can) of his formula. Without it, I would not have enough to make it until Friday afternoon. Luckily Rachel Thames Walker was on her way over yesterday and passes right by their office. She was able to bring it to us without requiring me to leave the house!
For it says in Matthew 6: 31-32 "So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them".
Then, we received a package from someone in Washington State. It was addressed to Jonah. I asked Linn if he knew anyone from there, and he said no. I knew I didn't know anyone. When we opened the package, there was a beautiful blanket and shawl in it! Inside was a card from Martha Hall. She said that her son Jamezell works with my cousin in Georgia and she had heard about Jonah. She has been reading our blog and has been praying that Jonah grows up to be a healthy and fabulous young man. She is in the prayer shawl/blanket ministry at church and felt led to make a blanket for Jonah and a shawl for Lily. They are absolutely beautiful!! She feels God has given her the hands, eyes, and heart to make pretty things. I could not contain myself after reading this. Come to find out, when I told my cousin about it, she called Jamezell. His mother was just having surgery to remove a tumor. To think that she was sick and took the time to do this for my family is absolutely amazing. I pray that God heals her. She has an amazing gift and talent. She is truly glorifying God in what she does. Now, she has a whole family praying for her as well. I hope those of you who read this pray for Mrs. Martha Hall as well.
For it says in Matthew 6: 31-32 "So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them".
Then, we received a package from someone in Washington State. It was addressed to Jonah. I asked Linn if he knew anyone from there, and he said no. I knew I didn't know anyone. When we opened the package, there was a beautiful blanket and shawl in it! Inside was a card from Martha Hall. She said that her son Jamezell works with my cousin in Georgia and she had heard about Jonah. She has been reading our blog and has been praying that Jonah grows up to be a healthy and fabulous young man. She is in the prayer shawl/blanket ministry at church and felt led to make a blanket for Jonah and a shawl for Lily. They are absolutely beautiful!! She feels God has given her the hands, eyes, and heart to make pretty things. I could not contain myself after reading this. Come to find out, when I told my cousin about it, she called Jamezell. His mother was just having surgery to remove a tumor. To think that she was sick and took the time to do this for my family is absolutely amazing. I pray that God heals her. She has an amazing gift and talent. She is truly glorifying God in what she does. Now, she has a whole family praying for her as well. I hope those of you who read this pray for Mrs. Martha Hall as well.
It is amazing that Jonah has touched so many lives,
and his journey has just begun!
5/15/12 By: Amy Pitts, Mother
Not only is Jonah 8 lbs 3.5 ounces today, but we found out we qualified for Baby Net! It will help provide physical therapy, occupational therapy and speech therapy to Jonah at no cost! YEAH!!
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5/16/12 By: Amy Pitts, Mother
Today was mentally and physically exhausting for Linn, Jonah and I. We were at MUSC for 6 hours. I am not enjoying the biweekly LONG visits, however I do enjoy hearing positive news sometimes. We started with a Head CT, where the tech said, "he's just moving around too much". Hum.....a 2 month old move, never! Then we had a urologist appointment. Waited....waited....waited. Luckily the doctor was really nice. We will have to go for two ultrasounds in 2 weeks to find out more specifics. Then, go back a few days later to get the results. Then it was a quick sub from Subway and up to Cardiology, where we had an echo then an EKG. They said Jonah is doing great. We had to increase his feed level and will try to take him off one of his meds this Friday. If he continues to do well, we will try to move him toward "bolus" feeds. That would mean that he wouldn't be hooked up to the feeding tube all day! That would make me VERY happy....less chance of him getting hurt accidentally. As we were getting home, we passed by one of our neighbor's house. Karsten McElfresh and Christie McElfresh were outside, and then gave us and amazing dinner! How amazing is GOD. We were trying to figure out what to eat, and he provided....through an amazing couple! Thanks guys! It was enjoyed! Tomorrow is his two month appointment, and his first set of shots. He hasn't gotten any shots yet because of his surgeries. We hope he will do well!
5/21/12 By: Amy Pitts, Mother
Jonah has good news! Because he has gained weight steadily, we only have to send in our stats to the doctor Monday, Wednesday and Friday now! Also, we are working toward feeding 25 ml/hr so we can have a 2 hour break during the day. I will enjoy being able to take him for longer walks and maybe even out to Publix once he is cleared to go out in public. Today he was 8 lbs 10 ozs!
On a side note, his stomach has been real uncomfortable today. I started reading the fine print on one of his medications......"medication may cause stomach pains......child might draw up legs in discomfort"...... Not only is my poor child dealing with a heart condition and acid reflux, but we now know that some of the medications he needs to survive cause him discomfort. :( Hopefully after his last surgery in between 2-4 years of age he won't be required to take it any longer. Pray that the discomfort doesn't last that long.
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