Wednesday, April 30, 2008
Shoe Tower
In addition to walking his dog, Grant is also into making towers out of shoes. It works out really well for me because I can lay in bed and get much needed rest while he destroys the closet. I'm not sure if anyone besides the grandparents will appreciate this video, but what makes me chuckle every time is the fact that Grant claps for himself each time he gets a shoe to balance.
Tuesday, April 29, 2008
Saturday, April 26, 2008
A Normal Week
This week was probably the most normal one we've had yet! We had friends over for dinner (and they brought their child!), went to music class and we were outside at the park everyday. It is amazing to see the difference in both Grant and me now that we have more options than, "do you want to play upstairs or in the basement today?" I am waking up looking forward to what the day will bring.
Tuesday, April 22, 2008
Pulmonary Lymphangiectasia
Today Grant saw the pulmonologist because he's still wheezing. The good news is that the wheezing is not due to fluid in his lungs, but left over mucus from his ear infection.
The pulmonolgist also told us that in about a week Grant can stop his breathing treatment. (The bummer part about this is that he is not sure it ever helped Grant in the first place, even though we've been doing it for a year and a half.) But, we are so happy to not have to torture Grant by holding him down every morning while we force a mask on him. This will mean that Grant is off ALL medications! Yeah God!
The doctor said that we are allowed to start having play dates, going to music class etc! He reiterated to me that he would recommend Grant mostly play in open air environments and stay away from sick kids, but he said this summer is a good time to push Grant. We started today with his first play date of the season. Grant had a blast.
When I asked the doctor about the long term prognosis he said we'd still have to hole up next winter and get shots for RSV. He said that at this point it appears that Grant still has pulmonary lymphangiectasia. (See description below.) He said that we can do tests on Grant's lungs when he's 5 to see if he's outgrown it. I told him that we're praying he'll be 100% healthy by the time his little sister arrives. :)
Pulmonary Lymphangiectasia: (as described on the website littleleakers.com, dedicated to those who suffer from this disease)
Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the lungs. The cause of Pulmonary Lymphangiectasia is unknown. The signs of PL can sometimes be seen prenatally, but most commonly postnatal. Many infants are stillborn. The newborn infants show respiratory distress.
The typical presenting symptoms include rapid breathing, and recurrent cough or wheeze. An examination of the patient usually reveals the presence of fine crackles throughout the lungs.
Diagnosis of pulmonary lymphangiectasia can be difficult. Although chest x-rays are usually abnormal, the x-rays can reflect fluid in the chest cavity or lung tissue. Chest CT scans can show patchy areas of fluid and over inflation in PL patients.
Most patients who survive through early infancy continue to have respiratory problems (wheeze, recurrent cough, and pneumonia) in the first several years of life. Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6 years old. The only treatment is medical support until patient is no longer in need of support. The evidence suggest that primary pulmonary lymphangiectasia does not have as dismal a prognosis as in most cases and clinical findings improve after the first year of life.
The pulmonolgist also told us that in about a week Grant can stop his breathing treatment. (The bummer part about this is that he is not sure it ever helped Grant in the first place, even though we've been doing it for a year and a half.) But, we are so happy to not have to torture Grant by holding him down every morning while we force a mask on him. This will mean that Grant is off ALL medications! Yeah God!
The doctor said that we are allowed to start having play dates, going to music class etc! He reiterated to me that he would recommend Grant mostly play in open air environments and stay away from sick kids, but he said this summer is a good time to push Grant. We started today with his first play date of the season. Grant had a blast.
When I asked the doctor about the long term prognosis he said we'd still have to hole up next winter and get shots for RSV. He said that at this point it appears that Grant still has pulmonary lymphangiectasia. (See description below.) He said that we can do tests on Grant's lungs when he's 5 to see if he's outgrown it. I told him that we're praying he'll be 100% healthy by the time his little sister arrives. :)
Pulmonary Lymphangiectasia: (as described on the website littleleakers.com, dedicated to those who suffer from this disease)
Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the lungs. The cause of Pulmonary Lymphangiectasia is unknown. The signs of PL can sometimes be seen prenatally, but most commonly postnatal. Many infants are stillborn. The newborn infants show respiratory distress.
The typical presenting symptoms include rapid breathing, and recurrent cough or wheeze. An examination of the patient usually reveals the presence of fine crackles throughout the lungs.
Diagnosis of pulmonary lymphangiectasia can be difficult. Although chest x-rays are usually abnormal, the x-rays can reflect fluid in the chest cavity or lung tissue. Chest CT scans can show patchy areas of fluid and over inflation in PL patients.
Most patients who survive through early infancy continue to have respiratory problems (wheeze, recurrent cough, and pneumonia) in the first several years of life. Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6 years old. The only treatment is medical support until patient is no longer in need of support. The evidence suggest that primary pulmonary lymphangiectasia does not have as dismal a prognosis as in most cases and clinical findings improve after the first year of life.
Saturday, April 19, 2008
Wheezing
Grant got a pretty bad cold/cough/ear infection and nasty yeast infection last week. He started wheezing on Tuesday, so I took him to the doctor and they said that his lungs sound clear. This is great news, but we'll feel a lot better when he stops wheezing. He seems to be pretty uncomfortable and is having a lot of trouble sleeping. It is so hard to know what hurts because he can't tell us. I am going to try to get him in to the pulmonolgist on Monday to have him check out his lungs again. I want to make sure he is not having trouble breathing.
Please also pray for our friend's baby, Rhyer, who had his second heart surgery last week. The heart part of his surgery went well, but they hit a nerve which paralyzed his lungs so he can't breathe well. He'll have to have another surgery on Monday to correct this. What a long journey.
Please also pray for our friend's baby, Rhyer, who had his second heart surgery last week. The heart part of his surgery went well, but they hit a nerve which paralyzed his lungs so he can't breathe well. He'll have to have another surgery on Monday to correct this. What a long journey.
Tuesday, April 15, 2008
Sunday, April 13, 2008
Dancing Grant
This morning Grant and I had our own church service. Here is a video of Grant praising God.
Friday, April 11, 2008
Chest x-rays
We just got back the results of Grant's most recent chest x-rays. Unfortunately, they are unchanged. (ie. still not good)I am both surprised and disappointed by this news. I really thought they were going to tell us that his lungs were healed. He looks so healthy and he weathered his two colds this winter so well. So, as for now we continue with the breathing treatments and continue to be careful of germs.
Originally the doctors thought Grant could leave the house by now to play with other kids because flu season is typically over. (I guess the cold/flu germs are what are most dangerous to his compromised lungs.) However, the doctor told me that she saw one case of the flu this week along with a case of RSV, so she wants Grant to continue to stay away from people until the flu is officially gone for the season. So, we continue to wait. It feels extra hard to wait right now because we are so close, but yet so far.
Thankfully, we've had a few warmer days lately so we've gotten outside to play. Grant doesn't know how to do sign language for "outside", but he knows how to sign "drive the car," so when he wants to go outside he does the sign for "drive" because he knows that the car is outside and if I just open the door he can escape. Last week I opened the door and before I could get my shoes on he was running down the sidewalk toward the park by himself. :)
Originally the doctors thought Grant could leave the house by now to play with other kids because flu season is typically over. (I guess the cold/flu germs are what are most dangerous to his compromised lungs.) However, the doctor told me that she saw one case of the flu this week along with a case of RSV, so she wants Grant to continue to stay away from people until the flu is officially gone for the season. So, we continue to wait. It feels extra hard to wait right now because we are so close, but yet so far.
Thankfully, we've had a few warmer days lately so we've gotten outside to play. Grant doesn't know how to do sign language for "outside", but he knows how to sign "drive the car," so when he wants to go outside he does the sign for "drive" because he knows that the car is outside and if I just open the door he can escape. Last week I opened the door and before I could get my shoes on he was running down the sidewalk toward the park by himself. :)
Wednesday, April 09, 2008
Boy or Girl?
Today's appointments at U of M could not have gone better. The ultrasound was very detailed and showed every part that was supposed to be there (or not be there, as in our baby girl's case). The purpose of the echo was to rule out some major heart defects, but they warned us in advance that the chance of being able to see the veins was very small.(This was what caused Grant's defect.) In the end they were able to see 3 out of the 4 veins(the 4th is probably there, but they just couldn't find it) and they all had a great connection to the heart and good blood flow. They told us that it would be very rare for something to be wrong with the baby's heart after the great pictures that they got!! We are so relieved and thankful. Thank you for all of your prayers! It was great to know that we had so many people praying for us today.
Saturday, April 05, 2008
Puerto Rico
We're back after an amazing time in Puerto Rico. Grant was an angel for grandma and grandpa. Here's a picture Jim took of my 21 week belly. We head to U of M on Wednesday for the echo on the baby's heart and to find out the sex.
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