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.

Walking the dog

Grant is really into walking his dog down our street.

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.

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.

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.

Spin Cycle

Grant really gets in to doing laundry..

Dancing Grant

This morning Grant and I had our own church service. Here is a video of Grant praising God.

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. :)

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.

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.

Bye Bye Grant!

Grant, mommy and daddy are off to Puerto Rico for the week and for our first extended time away from you since you were born. Be extra sweet for Grandma and Grandpa. We'll miss you more than you can imagine! Love you, little buddy.

Giggling Grant

Turning the Corner

It looks like Grant has successfully battled his second cold of the winter. He got sick last week with a cold and cough and we headed right in to the doctor. She said his lungs sounded clear and if he doesn't run a fever and his cold stays out of the lungs then we have nothing to fear. So far, so good. Unfortunately, he passed on his cold to his mommy and as of today his daddy too. I'm told that the winter cold usually peaks at the end of February, but this year it is still going strong at the end of March. We can't wait for spring!! Grant gets chest x-rays next week and we meet with his pulmonolgist on April 11 to find out how his lungs look. We're praying for total healing so that we can not only leave the house this summer, but next winter as well.

Just another work day..

Outside Pictures

Our sweet neighbor, Antonio, took these of Grant outside this weekend.

Doing Better

We're so thankful for this blog. It seems as though every time I post something requesting prayer God is so quick to answer it. Grant had a much better day yesterday and seems to be back to himself today. Thanks for praying!

Where's my boy?

Grant has not been himself since the incident with the vaccine. It's been a week now and he's still bumping into walls (his ears are fine), is really moody and doesn't want to eat. Please join us in praying that Grant gets back to his normal self soon and that no damage was done.

Fun Grant pictures

Grant waiting patiently by the door for me to come put his snowsuit on.

He is really into cars right now. You can find a race car under any couch, chair or bed at our house.

Grandma and Grandpa giving Grant good-bye kisses before they head back to Florida.

Vaccine horror story

Grant had a very bad reaction to his vaccine on Friday. By Friday night he had over 104 temperature. This caused his heart to beat very fast which was extra scary with Grant's history. With the doctor's guidance at 2am we were able to get his fever down to 100 through Motrin, Tylenol and luke warm baths. Actually, they were pretty darn cold baths. If you know Jim then you know he sometimes takes things to the extreme. He kept reciting, "better to have him shiver than have brain damage." Once Grant started feeling better he decided that he was rather happy to have both mom and dad playing with him in the middle of the night and we even heard a few giggles from him. He is almost back to normal today except for one weird thing- his balance. He has been running into walls and falling down a lot while walking, which is not typical for him. Please pray that he would not have any damage or lingering affects from this vaccine.

15 month check up

Today Grant went in for his 15 month well visit. It was overall good, but he experienced it as bad. Well, let me back up...Yesterday the visiting nurse came to the house to give Grant his two shots for RSV that he gets every month. But, she accidentally hit a vein on one of them, he bled a ton and was a lot more upset than normal for the rest of the day.

He woke up fine this morning and we headed to the doctor's. This may seem weird, but he normally loves the doctor's office. He loves seeing other kids in the waiting room and from the minute the doctor walks in he is smiling and trying to grab all of her fancy tools. But, today when the nurse walked in (different nurse than yesterday) he freaked out. She didn't even do or say anything. He started screaming, "mamamamamamamamamama" and was clinging to me with huge tears streaming down his face. He would not even sit on the scale for her to weigh him. Then he started thrashing around and tried to head-butt her when she came near. It was the weirdest thing. I have never seen him so scared in his life. He cried through almost his whole appointment until I sat him in the stroller and told him we were leaving. Then, he stopped crying.

I am hoping that he was just having an off day and did not decide to hate doctors, because we have to see them quite often. I wonder if it was the visit from the nurse yesterday or the fact that whenever I do his breathing treatment I tell him that the doctor is making me do this. :) I have to- he cries through the whole thing and I don't want him to think it is my idea to torture him everyday. Either way, the more he understands the harder it is to subject him to pain. When he was a baby it was hard, but in a different way. I've talked to other moms who don't wince at all when their babies get immunizations. I'm near tears every time they poke him. Perhaps it is because I've seen him go through more pain than any child should have to. Or, maybe I'm just emotional and pregnant. I think about how this summer he has to be sedated for his echo and it makes me cringe. He's not old enough to reason with, but he's old enough not to like what's happening to him. When he looks up at me screaming, "MAMA!" I just want to take him and run away and not let anyone poke him again.

Okay, now I do sound emotional and pregnant, so I'll get to the good news before I start crying. :) The doctor said he looks great! She can't believe how far he as come and seems to be on target for all of his developmental milestones. It is really a miracle. We give God all the glory for our joyful, healthy boy. Next appointment: pulmonolgist in April. That's a big one. I'm hoping for a "get out of jail free" card. (ie. permission to take Grant out of the house.)