kmparrish5
Mouseketeer
- Joined
- Apr 6, 2009
- Messages
- 112
Hi everyone!
My name is Kristy (thirty-six). I have been married to a wonderful man, Stephen (thirty-nine), for twelve years. We have three terrific children, Bailee (nine-wish kid), Caroline (five six in May), and Landon (twenty-two months).
Bailee has dealt with some challenges. She struggled to breathe immediately after birth and was diagnosed with Pierre Robin Sequence (PRS) shortly thereafter. PRS is a condition where the child is born with a small lower jaw, the tongue falls in the back of the throat blocking the airway, and a cleft palate develops due to the tongues position. This condition was considered a genetic mutation; therefore, we were told we would likely have healthy children if we chose to have more. After struggling to breathe and eat for five weeks, Bailee left the NICU with a feeding tube and trach. For most of the first year Bailee was in and out of the hospital. Her cleft palate was repaired at seven months. The hardest surgery however was the jaw distraction performed at ten months. This procedure lengthens the lower jaw hopefully enabling the child to breathe independently; as a result, the trach would no longer be needed. During this operation, the lower jaw bones on both sides of Bailees face were broken. Metal rods were attached to her jaw bones. They came out about two inches on both sides of her chin. We used a screwdriver type tool to turn the rods twice a day for two weeks. The surgery helped Bailee get rid of her trach at twenty-one months. Her feeding tube was removed at two and a half years. From September until April of Bailees first three years, she was unable to leave the house; otherwise, she would always end up in the hospital. Bailee has had a total of sixteen surgeries. Some were major while others were small day procedures. After all of these it has still not been easy to hand Bailee over to a medical staff. In addition to having experienced so many surgeries, Bailee has asthma and chronic sinus. At age three she also developed symptoms of anxiety and Obsessive Compulsive Disorder. She works to deal with these daily.
When Bailee was three and a half we had our second child, Caroline. She was born at forty-one weeks and continued to do well. She was a bit physically delayed and often sick, however. Her issues were much less severe than Bailees. We rejoiced and thanked God for this healthier baby.
We decided to go for a third and final child. Our son, Landon, was born when Caroline was four years old. We knew he would be our last considering I vomited constantly until both Caroline and Landon were delivered. I also became very ill with preeclampsia during the last week of my pregnancy with Landon. Landon was born at thirty-seven weeks. He showed no signs of PRS and was declared healthy. My gut told me something was wrong, however. Landon refused to eat while in the hospital, but the staff kept telling me he would eat when he was hungry. We went home feeding him with a one cc/ml syringe. He still continued to have no interest in eating for the first four months of life. Landon was barely growing and not getting stronger. I continued to tell the pediatrician something was wrong, but he kept saying Landon was just a little small. Landon was hospitalized with RSV at five months. At ten months he weighed thirteen pounds and could barely hold up his head. After changing pediatricians we began looking into the reasons for his failing to thrive. In addition to seeing a new pediatrician for help we also used a pulmonologist, neurologist, gastroenterologist, and geneticist. Landon became ill and ended up hospitalized due to dehydration. This turned out to be a good thing. We stayed until we found some answers. A modified barium swallow study showed Landon was aspirating all consistencies. As a result, he had surgery to place a g-button and was no longer allowed to eat orally. It seemed to be easier to deal with this since our oldest had one, also. I knew my sweet son would finally begin to grow and hopefully develop. Fast forward to the present Landon is getting stronger every day. He has gained eleven pounds and grown several inches in the past year. He started walking at twenty months but needs orthotics to stabilize his feet. Landon is still completely fed via g-button. He has a strong desire to eat by mouth. We do not eat or drink in front of him since he cries if we do.
In May 2008 we finally got a diagnosis for Landon. We learned both girls and he have a 22q11.2 distal deletion. This is very rare and a newly diagnosed chromosomal deletion. There are only ten to twelve documented cases in the world. Therefore, we dont know what the future holds. Our kids do get sick a lot; both girls have missed twenty to twenty-five days of school this year. Landon has been just as sick. They do seem to stay healthier during the warmer months; consequently, we are looking forward to them.
We just received confirmation for our trip dates. It will be May 23rd-29th! I better plan quickly since we leave in only 38 days!
My name is Kristy (thirty-six). I have been married to a wonderful man, Stephen (thirty-nine), for twelve years. We have three terrific children, Bailee (nine-wish kid), Caroline (five six in May), and Landon (twenty-two months).
Bailee has dealt with some challenges. She struggled to breathe immediately after birth and was diagnosed with Pierre Robin Sequence (PRS) shortly thereafter. PRS is a condition where the child is born with a small lower jaw, the tongue falls in the back of the throat blocking the airway, and a cleft palate develops due to the tongues position. This condition was considered a genetic mutation; therefore, we were told we would likely have healthy children if we chose to have more. After struggling to breathe and eat for five weeks, Bailee left the NICU with a feeding tube and trach. For most of the first year Bailee was in and out of the hospital. Her cleft palate was repaired at seven months. The hardest surgery however was the jaw distraction performed at ten months. This procedure lengthens the lower jaw hopefully enabling the child to breathe independently; as a result, the trach would no longer be needed. During this operation, the lower jaw bones on both sides of Bailees face were broken. Metal rods were attached to her jaw bones. They came out about two inches on both sides of her chin. We used a screwdriver type tool to turn the rods twice a day for two weeks. The surgery helped Bailee get rid of her trach at twenty-one months. Her feeding tube was removed at two and a half years. From September until April of Bailees first three years, she was unable to leave the house; otherwise, she would always end up in the hospital. Bailee has had a total of sixteen surgeries. Some were major while others were small day procedures. After all of these it has still not been easy to hand Bailee over to a medical staff. In addition to having experienced so many surgeries, Bailee has asthma and chronic sinus. At age three she also developed symptoms of anxiety and Obsessive Compulsive Disorder. She works to deal with these daily.
When Bailee was three and a half we had our second child, Caroline. She was born at forty-one weeks and continued to do well. She was a bit physically delayed and often sick, however. Her issues were much less severe than Bailees. We rejoiced and thanked God for this healthier baby.
We decided to go for a third and final child. Our son, Landon, was born when Caroline was four years old. We knew he would be our last considering I vomited constantly until both Caroline and Landon were delivered. I also became very ill with preeclampsia during the last week of my pregnancy with Landon. Landon was born at thirty-seven weeks. He showed no signs of PRS and was declared healthy. My gut told me something was wrong, however. Landon refused to eat while in the hospital, but the staff kept telling me he would eat when he was hungry. We went home feeding him with a one cc/ml syringe. He still continued to have no interest in eating for the first four months of life. Landon was barely growing and not getting stronger. I continued to tell the pediatrician something was wrong, but he kept saying Landon was just a little small. Landon was hospitalized with RSV at five months. At ten months he weighed thirteen pounds and could barely hold up his head. After changing pediatricians we began looking into the reasons for his failing to thrive. In addition to seeing a new pediatrician for help we also used a pulmonologist, neurologist, gastroenterologist, and geneticist. Landon became ill and ended up hospitalized due to dehydration. This turned out to be a good thing. We stayed until we found some answers. A modified barium swallow study showed Landon was aspirating all consistencies. As a result, he had surgery to place a g-button and was no longer allowed to eat orally. It seemed to be easier to deal with this since our oldest had one, also. I knew my sweet son would finally begin to grow and hopefully develop. Fast forward to the present Landon is getting stronger every day. He has gained eleven pounds and grown several inches in the past year. He started walking at twenty months but needs orthotics to stabilize his feet. Landon is still completely fed via g-button. He has a strong desire to eat by mouth. We do not eat or drink in front of him since he cries if we do.
In May 2008 we finally got a diagnosis for Landon. We learned both girls and he have a 22q11.2 distal deletion. This is very rare and a newly diagnosed chromosomal deletion. There are only ten to twelve documented cases in the world. Therefore, we dont know what the future holds. Our kids do get sick a lot; both girls have missed twenty to twenty-five days of school this year. Landon has been just as sick. They do seem to stay healthier during the warmer months; consequently, we are looking forward to them.
We just received confirmation for our trip dates. It will be May 23rd-29th! I better plan quickly since we leave in only 38 days!
If anyone needs some magic its you
Here are the new plans. I also added parades to this draft. My kids get really cranky and tired when we make the days too long. Therefore, I think it will be better to do the parades that occur during the day most of the time. We may change our minds once we get there. 
I think I am going to try to get Apria to ship one case to GKTW.
