Grant's cold

Grant has been up most of the night with a cough and cold. I am running out the door to visit a friend who was just diagnosed with cancer. Please pray for wisdom for Jim and healing for Grant.

Grant is doing great

It's been a while since I've posted...because there is no new drama to speak of! :) Grant is eating well (he has a tooth) and learning how to drink out of a water bottle. He seems to be capable of eating enough calories in solid foods alone, so now it is just a hydration issue. If he can improve a bit sucking the water bottle, then we can stop the "dream feeds" and get rid of the bottle all together. Please pray that he would make quick improvements with the water bottle!

Also, please pray for Jim and Grant as they navigate their first weekend without mama....(I know you guys will do great!!)

Happiest Baby on the Block

Grant is back to his old self. His fever is gone and he's smiling constantly. It is fun to watch his personality develop. If I had to describe him in one word it would be "aware." Grant really seems to know what is going on. His latest goal in life is to unbuckle himself from the carseat. Each time I put him in it he watches what I do and then spends the rest of the car ride trying to get himself out. Luckily, he has not had success yet.

He also really loves music. The faster and louder the better. Whenever I put on a CD he gets a big smile on his face and starts jumping up and down or rocking in place (depending on which type of activity center he is in). Do electric toothbrushes count as music? 'Cause he does the same thing when I brush my teeth in front of him. He just loves it.

Grant loves to play independently. I know, this is every parent's dream, and I did nothing to deserve it. One day I just put him in his pack and play with a few toys and he sat there playing for an hour. He spends time picking up each toy, shaking it, biting it and then talking to it. I consider this a huge gift from God because he's not a napper, so it allows me to do things like this.

Anyway, I'm feeling so thankful for Grant and who he is. I'm glad to have him back to his old self once again.

Grant's Dedication

This weekend at church Grant will be getting dedicated (our church's version of "christening"). We will be celebrating Grant's life and acknowledging him as ultimately belonging to God. If you would like to join us in this special time, please feel free to do so. It will take place during our normal church service on Sunday at 10:30am. (See www.genesisthechurch.com for directions)

Fever Update

Grant is still not himself. His fever stays down as long as he has Motrin in him, but when it starts to wear off his fever goes back up. His eyes are a little glassy and he's really fussy, but other than that we can't find anything wrong with him. Please continue to pray for complete health and healing! We'll head back to the doctor tomorrow for a recheck.

The good news- Grant enjoyed eating again today! He had mac-and-cheese with ground chicken for dinner and loved it. Our OT said that if we can get him to start drinking more water (through a sippy cup or water bottle), then she thinks we can graduate him from occupational therapy by the end of the summer. Yippee!

Grant's first time on the lake

Go away fever!

Please pray for Grant to get well. He has not been himself since he woke up this morning. We went to the pool for a couple hours, since that seems to be his favorite activity these days, but he was still really fussy. So, after he wouldn't stop crying this afternoon I finally took his temperature and found that he had a fever.

After a round of Tylenol and Motrin his fever still didn't go down so we went back to the doctor. She couldn't find anything wrong with Grant and thinks it may be a virus that is going around. So, we're going to keep trying to get his fever down and take him back to the doctor again in a day or two for a recheck. Please pray that his fever would go away and that if he has a virus that it would not turn into anything more serious.

6 month check up

Today we went to a new pediatrician for Grant's 6 month check up. After trying 5 pediatricians I think we have finally found a perfect fit. It makes me so excited to finally have a primary care doctor for Grant. We found out that he's still at the 90th percentile for height and the 25th for weight.

Grant has been doing better with solid food lately. He really prefers food that he can pick up and put in his mouth himself -french fries, Gerber cheese puffs and other healthy foods like that. :) The doctor watched him eat the cheese puffs and thinks it is more of a control issue than a food issue. This makes sense because he is probably sick of all the medication and pokes that come at him without his consent. She said that if Grant starts eating more solids and drinking a little better out of a sippy cup then we can get rid of the bottle! We are still calorie counting and would appreciate your prayers that Grant continues to eat more solids.

Grant's 6 month old photos

Grant's first swim lesson

Today Grant and I had our first swim class at Goldfish Swim School. Grant loved it! Here's a picture of him in his suit. He didn't tolerate the goggles for class. :)

Pulmonary Lymphangiectasia

Today we saw a pulmonologist for the first time. Because Grant's heart looks good, our cardiologist suggested we have Grant's lungs looked at more intensely because he's still breathing hard. The pulmonologist diagnosed Grant with pulmonary lymphangiectasia (PL). Here is a brief overview:

Lymphatic fluid in the lung is derived from normal leakage of fluid out of the blood capillaries in the lung and the intestines. In PL, the channels (lymphatics) that carry lymph fluid are not properly connected and become dilated with fluid (lymphangiectasia). (This is why in Grant's chest x-rays they always say that his lungs look wet.) This fluid makes the lungs less elastic, which this causes breathing difficulties.

What does this mean for Grant? He has a greater chance of having respiratory distress. (In other words, if Grant catches a cold he would likely have to be hospitalized because it would be so hard for him to breathe.) According to research, most patients who survive the neonatal and early infancy period continue to have respiratory problems (recurrent cough, wheeze and pneumonia) in the first several years of life with increased rates of hospitalization. A few patients require home supplemental oxygen for a period of time. Overall, respiratory condition and X-ray abnormalities improve during infancy and childhood, with many patients having minimal symptoms by age six.

So, overall, the prognosis is good. PL is something that Grant will likely outgrow. In the meantime we will continue to be the germ police. The doctor switched Grant's inhaled steroid, which makes all the difference in some kids and we're hoping Grant is one of them. We'll go back to see the doctor in a month for more chest x-rays.

Oh, and the doc said that Grant's lung condition has nothing to do with his eating difficulties. If it was due to not getting enough air then he said Grant would not be able to drink his bottle while sleeping, which is still his preferred method of feeding. However, Grant did enjoy three french fries for lunch today (shhhhh- don't tell dad), so maybe he just doesn't like the healthy food we've been trying to give him. :)

6 months old today

It's exciting to think how far we've come in the last 6 months. Exactly 6 months ago at this time Grant's vitals were dropping and a ventilator was in his mouth. I was recovering from giving birth and preparing for our first born to have open heart surgery. It's amazing to look at him now- almost 30 inches long, sitting up on his own and smiling at everyone who walks by. I'm so thankful.

This week has been the hardest for me since the first week of Grant's life. Both Jim and my parents were out of town. Feeding Grant is still an ongoing battle. On average I spend about 8 hours a day trying to get him to eat. I'm so enjoying our time together between feeds and wish so much to have more "fun time" in our days. I dread feeding Grant and even with all that work he has not met his caloric goal in about a month. He actually lost a half a pound this week.

We see the pulmonolgist this week and based on the results will be closer to narrowing down why Grant doesn't like to eat. The feeding disorder clinic is looking like a better option more and more each day. We just have to rule out all other health issues before we go. Please continue to pray wisdom and endurance for us and total healing for our baby.

Grant's Feeding Club

Below are some friends who belong to Grant's feeding club. In order to be a member you must attempt to feed Grant (or distract him while others feed him) on a regular basis. We are still accepting applications. :)

Nanny Jayne


Occupational therapist, Kia


Mom's friend, Carmel

Note: Not pictured: Kathy, Louise, Barbara,Barb R., Barb D., Courtney, Jenny, and many others!!

Grant's Echo

Grant's appointment at U of M today brought unexpectedly good and bad news. The unexpectedly good news is that his heart and veins look excellent. The doctor said that he honestly didn't expect the pulmonary pressures in his heart to look as good as they do!

The not so good news is that it must be a problem with Grant's lungs that is causing him to breath so hard. We have known that he's been breathing hard, but what we didn't know is that how rare that is for it to continue this long after surgery. When I asked the doctor how long it would take the lungs to heal he said he couldn't give me any statistics because it is rare that someone whose heart is fine is still breathing so hard this long after surgery. So..... to the pulmonologist we go!

Grant and Uncle Hal

Big Day Tomorrow

Early tomorrow morning we are headed to Ann Arbor for Grant's echo. Please pray:
1. That they find his lungs healed
2. That the veins connected during surgery have not changed
3. That Grant is given the perfect amount of sedation (last time he had a hard time waking up)
4. That Grant eats well tonight and again after the sedation. (I have to wake him in the night to feed him a couple times because he can't have food before the sedation.)
Thank you!

My fun kid

Despite all the work that Grant takes, I have to say I am having fun. Grant is just a fun, silly kid. Tonight we went out to dinner for my brother's graduation. There were paper tablecloths on the table and unfortunately, Grant thought he was at the doctor's office... See evidence below.

Grant's dining experience

Grant's feeding rollarcoaster

When Grant woke up at 3am this morning he was wide awake. I rocked him in the rocker for a while and he just wasn't falling back asleep. So, being tired and just wanting to get him to eat I put the bottle in his mouth. To my surprise he started sucking. It took him awhile because his suck has become weak through lack of practice, but he ate almost the whole thing while staring up at me with his big green eyes. Then he went back to sleep.

I was so excited to try to feed him this morning, thinking maybe he was healed. But, unfortunately, he didn't want his bottle awake and it was a battle to get him to take it asleep. I am already dreading his next feed. I hate this feeling of not wanting to feed Grant because I never know how it is going to turn out. We really need a breakthrough.