Happy Grant

A visit to the zoo

Mom and Grandpa took me to the zoo, but they didn't want to take me out of my stroller because I hate getting buckled back in. So, they tried to give me the best view possible...

Mr. Mischief

Evaluation by Early On

Today Grant had his evaluation with Early On, an early intervention program for kids with medical conditions and developmental delays. I think they did a great job and saw a pretty accurate picture of Grant. They said he's on track for most things (he can throw a ball better than most 18 month olds!), but he shows signs of a speech delay, crawling issue and stiff muscles. Hopefully these things can be corrected with different kinds of therapy. We've got more appointments set up to evaluate him further. She did think that Grant was a ton of fun, especially when he'd do something, smile and clap for himself. :)

Unfortunately, Grant has the flu. We're trying our best to keep him hydrated and will have to see the doctor tomorrow if he's not better. Please pray for a speedy recovery.

Grant and his buddy Jack

Congratulations Aunt Lindsay and Uncle Josh!

What's with this goofy crawl?

Grant started crawling yesterday on all fours. He loves being able to get across the room and into everything that he's not supposed to!

Unfortunately, when I say crawl, his crawl does not look like a normal baby crawl. He is crawling using three limbs and dragging his right foot behind. At first we thought this was kind of cute, but after further discussion with our OT, we realize that it could signify some sort of problem in the brain. Since he was born Grant's right side of the body has been behaving differently than the left. Nothing huge, just the way that he grasps things and moves them. I have mentioned it to our ped, but she didn't see anything that made her concerned.

We'll try to get Grant in to see someone next week. In the meantime, please pray for peace for me. I'm not sure I can handle one more doctor or one more serious problem with my little boy. And, as always, thanks for your prayers for total healing.

"Welcome to the attachment phase!"

Grant is MR.Clingy these days. He loves to be snuggled by his mommy all the time. When the phone rings and mommy answers it, he cries. When she puts him in his pack and play to make dinner he raises up his arms and grunts. Did I mention Grant is clingy? It's nice to know I'm loved and all, but sheeeeh, how do moms of 8 month olds get anything done???

Between knocking over stacks of blocks and eating anything he can get his hands on, Grant is scooting all over the room on his bottom. We're still working on exercises everyday to develop skills for crawling and walking. He's getting closer everyday.

Two docs today

Today Grant saw both the pulmonolgist and the GI specialist. The good news is that Grant's lungs are clear of signs of pneuomonia. The not to great news is that his lungs still look just as bad as they did at our last visit, despite the new medication.

I asked if there is anything we could do. To quote the doctor, "There are some kids who we just don't want catching colds and Grant is one of them, so carry hand sanitizer with you everywhere." So, we continue to be super careful and pray that his lungs will heal.

Grant continues to enjoy his solids and is drinking a couple oz a day from a straw. The other day when our occupational therapist was working with Grant he started crying, (She was making him work!)so we offered him some Gerber puffs and he stopped crying immediately. She looked at me and said, "did you ever think we'd be bribing your kid with food?!" We've come a long way!

Grant and his friends from far, far away...

Grant with his friend, David, who came all the way from Norway to visit! (In case David thought he was going to steal the show, Grant took action)

Grant with his future wife, Hailey, who currently resides in California

A trip to the feeding specialist

On Friday we went to Ann Arbor to see a "feeding disorder specialist." It went great. She gave us helpful hints on how to fatten Grant up (add olive oil to his veggies and butter to his fruit) and was very encouraging. She thinks that Grant has great "straw skills" and is encouraging us to keep offering Grant water with a straw throughout the day. At this point he can only take a few sucks and then spits much of it out, but the doctor thought this was great. So, we'll keep at it.

She wants us to keep "dream feeding" Grant as long as possible. She also really liked the fact that we were giving Grant chicken broth by syringe. She said that this is what they do in Asian countries to wean their babies and it is a very good practice. Who knew?! She thinks that we're going to be able to avoid a g-tube in his stomach because he's made so much progress in just the last few weeks. (She watched a dvd with him eating over the course of the last month.)

The doctor had a few concerns about Grant's health (other than the feeding stuff), but nothing major. She thinks he's lacking in upper body strength (he has never really liked "tummy time") and that his lower legs are too tight. (He stands on his tip toes.) So, she is contacting a physical therapist to come to the house to work with Grant a few days a week. Over all, these things would probably correct themselves, but she wants to be proactive about them. As long as they come to us, I'm okay with it. Grant loves meeting new people so he'll be delighted.

Health Update

Grant: On Tuesday we went back to Beaumont to get follow up chest x-rays to make sure Grant's pneumonia was gone. Unfortunately, the x-rays show that his lungs are no different than when he had pneumonia two weeks ago, even though he isn't showing any symptoms. The doctor said that this is okay, because sometimes even after the symptoms go away it takes a while for the lungs to heal. Please continue to pray for full healing for his lungs.

Shannon: Remember the ankle that I sprained 4 months ago? Well, I've been doing physical therapy ever since I got my cast off and it still doesn't feel better. So, after visiting the doctor twice in the last week they've decided that surgery is my best option. So, on August 30 I'll have ankle surgery to repair the torn ligament. I'll then be in a nonwalking cast for 2 weeks, followed by a walking cast. I'm wondering how I'll keep up with Grant since he is only days away from being "on the move"... Gosh, when I told God I needed a break I didn't think He'd take me so literally. :)

I love my "grant-sized chair!"

Almost crawling

"I love to eat!"

We still need some improvement with the fluid intake, but here is a brief look at today's menu:

2 cups of grandpa's barley soup
3/4 of a banana
1 piece of string cheese
1 oz. goat cheese
5 apple wheat puffs
1 oz. of soup broth via syringe
1/4 cup avocado
1/4 cup rice cereal
1/2 cup squash
1/4 cup green beans

Wow! And we still have one more meal to go....

Feelin' Better!

I wanted to share this song by Elisha Hoffman that I read today in my prayer book. It brings me great comfort.

What a fellowship, what a joy divine,
leaning on the everlasting arms;
what a blessedness, what peace is mine,
leaning on the everlasting arms.
Leaning, leaning safe and secure from all alarms;
leaning, leaning, leaning on the everlasting arms.

Oh how sweet to walk in this pilgrim way,
leaning on the everlasting arms;
O how bright the path grows from day to day,
leaning on the everlasting arms.
Leaning, leaning safe and secure from all alarms;
leaning, leaning, leaning on everlasting arms.

What have I to dread, what have I to fear,
leaning on the everlasting arms?
I have blessed peace with my Lord so near,
leaning on everlasting arms.

A good report

Grant has turned the corner! Today the doctor said his lungs sound better. Thank you so much for all your prayers. This was such a scary experience. I never want to go through it again, but it helped to know that so many were praying for us. Today we are celebrating 7 months with Grant.

A visit from the nurse

Our visiting nurse came today to check out Grant's lungs. She said that there is a small pocket that sounds faint (for those who are nurses I'm sure there is some more scientific way of explaining it), but it is good that there is some noise coming from there. When he was first diagnosed with pneumonia there was no noise in one part of his lung (I guess this is where all the fluid was hanging out). So, there seems to be an improvement. He has now been on antibiotics for 72 hours. He is laughing again, which must mean he is feeling better. I guess I never knew how much those smiles kept me going until he stopped smiling. :)

Grant is still dangerously close to being dehydrated. Our occupational therapist also came today and was trying to get water down him with a medicine dropper. (It felt like the old days again.) She gave us some tips to work on Grant's swallow because even when he sucks he often spits the water out again. He has obviously been out of practice because he is only used to sucking while he's sleeping. Unfortunately, our dream feed days are numbered. He barely has a suck now while he is sleeping. Babies supposedly lose their sucking reflex in their sleep at about seven months. He'll be seven months tomorrow. We're praying that he keeps the suck long enough to master the water bottle or sippy cup.

No major changes

There are no major changes in Grant's health. He is still coughing a lot and it seems as if this causes him a lot of pain because he always starts crying after he coughs. (Which makes him cough more) The motrin seems to be helping with the pain. A nurse is coming to our house this afternoon to listen to his lungs. Thanks for praying.

Still suffering

Grant really appears to be suffering. We went to the doctor today and there has been no change. But, Grant's cough seems worse to us. He's miserable and tonight he choked on his snot and turned purple. We put a humidifier in his room and he finally went to sleep. Please pray for some peace for us so we can get some rest as well. It is so hard to watch Grant struggling like this. Please pray for wisdom for us too, so we would recognize signs of if/when we should take him to the ER.

Sick, but smiling

This morning around 6:15, Jim and I looked at each other and wondered why we hadn't heard Grant yet. Usually by that time we'd hear him playing in his crib or crying because he wants out. When we got to his room we found that he was crying, only it was so quiet we didn't even hear it. He has lost his voice and can only squeak. It sounds something like a baby seal being tortured. Or maybe a mouse who is being squeezed really hard. (This are the visuals I think of when I can't sleep...)

He did smile when he saw us, which was a good sign. But, he is still coughing really hard and then choking on what comes up. It is really breaking our hearts to watch him suffer like this.

Our other challenge is keeping him hydrated. Yesterday he only drank about 5 oz. total (while asleep). His goal is 28 oz. This morning I got about 4 oz. in. He is having such trouble sleeping because of his cough that we can't keep him asleep long enough to get the formula in him. Please pray that he would start drinking more from his sippy cup.

He is on an antibiotic, which should start helping him soon. Our visiting nurse comes this afternoon, so she'll be able to listen to his lungs and see if there is any improvement.

Urgent prayer request

Grant took a turn for the worse overnight. We just got back from the hospital. He has pneuomia. We'll go back to the doctor tomorrow and continue to monitor his breathing closely. Please pray for total healing to come quickly.

still going...

Grant is still coughing and sneezing up a storm. Please keep praying that it doesn't go to his lungs.

Back from the doc

I took Grant to the pulmonolgist today. He said that Grant's wet cough appears to be in his throat, not his lungs. Thank you, God.

Grant's cold

It seems as if Grant's condition has gotten worse overnight. He has a really bad cough now and it sounds very wet. He is pretty miserable and is not breathing as well as we think he should be. We'll be calling the doctor when they open to go in for a re-check. Please continue to pray for total healing for his cold, cough and lungs.

Still battling a cold

Grant has his first cold. I'm still out of town, but Grant went to the doctor yesterday and he said his lungs sound okay. Please continue to pray for this cold to go away and not turn into anything more serious.

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.

allergy testing

Grant got allergy tested today to make sure that food allergies are not what is causing him to not want to eat. After 20 pin pricks and three shots we were thankful to find out that he's not allergic to any foods that they could detect. Grant was not a fan of the test, but he took the best nap of his life afterwards. :)

Grant's feeding update

Today Jim and I met with Grant's GI doctor. He was extremely helpful. He confirmed what we already knew- that Grant is not eating enough so he is not gaining weight like he needs to be. He does not yet know the cause but said it is time to be aggressive in finding out more data. So, here is a summary of his plan:

1. Get the results of Grant's echo at U of M next week. (He said that if Grant is still having heart/lung issues, then that could be the cause of not wanting to eat. Can you imagine trying to eat while not being able to get enough air?)

2. If the results come back saying Grant's heart and lungs are fine, then he'll do a PH probe. This is a tube down Grant's nose into this belly for 24 hours that measures how much acid reflux Grant is still experiencing. If Grant is refluxing a lot, then this pain could be what is causing him to not want to eat.

3. If the PH probe comes back fine and Grant is still not eating then we'll head to Columbus, Ohio to one of the best "feeding disorder" clinics in the country. It is inpatient, so Grant would be checked in for 2 weeks while they work with him and us on "retraining" Grant to eat. This clinic has a very high success rate and would be well worth the 2 weeks if we got to bring home a child that liked to eat!

4. If Grant does not learn to eat at the clinic and is still not gaining weight, then they would consider putting a g-tube into Grant so we could feed him directly into his stomach.

Please continue to pray for Grant to be healed and for Jim and I to not grow weary.

Memorial Day Pictures

kisses from dad

Sucking on my pacifier

on my way to bed...

Do I look sleepy to you?

Grant and food

Grant continues to only drink his bottle while sleeping. As we learn more about this oral aversion we found out that this is called "dream feeding." The problem with this is that the sucking reflex that babies do in their sleep stops at around 7 months.

We are trying to come up with a contingency plan for if Grant stops "dream feeding." I had a taste of this tonight and finally gave up after trying for two hours to get him to eat. Every time the formula hit his throat he woke up agitated. It is so frustrating to spend so much of our day/night to try to get him to do something that is so basic.

The good news is that Grant likes solid food. The bad news is that he can't take in nearly enough to cover his caloric needs. The worse news is that even if he ate enough solids, without taking the bottle he won't get enough water to stay hydrated. (We are still working on the sippy cup.)

So, we are going to try to get our occupational therapist, GI doctor and cardiologist to agree on what to do when this happens. Our fear is that they are going to want to put in a G-tube (where food goes right to his stomach) because they really need him to get enough calories. Please pray that it doesn't get to this point. We would love to see Grant's feeding problems healed before we get to a crisis point. Plus, we're feeling weary and tired of battling him over every meal. We could use your prayers for strength and perseverance.

On the mend

I'm starting to feel better and been having fun taking pictures of Grant while hanging around the house. Today I decided to give him a bath outside. The pictures say it all...

Fun Grant Picts

Still sick

Today my brother asked me, "Shannon, why haven't you updated the blog? You can't just leave people hanging like that." I told him that nothing is new because I'm still sick so I'm hanging around my house in latex gloves and a surgical mask. But, he convinced me to post this so that everyone would know that Grant is fine. Neither Grant nor Jim has caught my bug and we're still waiting to hear from U of M on the date of his next echo. That's all.

I'm sick!

It seems that in the midst of the stress of the last couple of days my immune system has taken a hit. I've got some sort of upper respitory infection and feel quite terrible. My parents have Grant for the afternoon until Jim can get home from work. Please pray:

1. That Grant does not catch this virus! If it gets in his lungs he could easily wind up in the hospital.
2. That I recover quickly.
3. That Jim remains healthy and strong as he cares for Grant and me.

A visit to U of M

Last night Grant seemed to be "panting" (like a dog) and kind of gasping for air. So, today I took him to Ann Arbor to see his cardiologist. He wasn't too concerned about the panting- he thinks it is a behavioral thing Grant learned to do when he's excited or upset- but he is concerned about how hard Grant is breathing overall. He continues to retract (suck in so hard that you can see his ribs), which should have gone away 6 weeks after surgery. So, it is either his lungs or a problem with the veins from surgery restricting. He doesn't think it is an emergency, but he wants us to come back for a sedated echo in the next couple weeks to check on these two issues. Please pray that by the time we go back Grant is no longer retracting!