Progress Report

Grayson usually wakes up between 3:30 and 4:00 AM to eat and then goes back down for another hour or two before getting up for the day. So last night before Ryan and I went to bed, I mentioned we didn’t need to set the alarm for the Royal Wedding because we had the perfect alarm clock right next door. Obviously, we are not die-hard Royal fans by imploying this wakeup method. Well, G-Man obviously wasn’t too concerned about the events leading up to the actual nuptials because he didn’t start waking up until 5:30, right when Kate was making her way down the aisle. Perfect!

So Little Man and I got caught up in the wedding excitement and watched ad nauseum, all morning long, until it was time to head to the pediatrician’s office for his weight check. I felt like I was heading to a parent-teacher conference…what grade was my child going to receive? Had our work from the past month feeding him extra calorie formula done any good? I’ll admit something- to get in some 11th hour weight gain I attempted to give him an 8 oz bottle about an hour before we needed to leave. He’s never taken more than 6 ounces at a time. He promptly drank 2 ounces, emphatically refused any more, then 5 minutes later dramatically projectile vomited the 2 ounces all over himself and me. And I had him in a really cute outfit. I’ll show you, Mom.

As of 10:30 this morning, Grayson weighs 14 pounds, 8 ounces. We are back up to the 1.5 percentile. So now only 98.5% of children his age weigh more than him. My little Heavyweight Champ was a pill while the nurse weighed him and checked his heart and oxygen (do you think his 2 specialist appointments, EEG and 2 blood draws the past few weeks have given him a complex?) but thankfully fell asleep so I could talk to the doctor without a screaming-soundtrack. We discussed his possible reflux (he gags, coughs and spits up a lot) so we are going to try Prevacid for a month to see if that makes a difference. I told her about his struggles with solids, which probably are just another developmental delay but if it doesn’t improve in a few months she might refer us to an ENT. We talked about his visits to the neurologist and the endocrinologist and I realized I now sound like I am reading a book when I talk about this stuff. She does not agree with the diagnosis of Septo Optic Dysplasia, because of the lack of evidence of a metabolic disorder. In fact, she had already been sent some of the results of the blood test from Monday! All of the blood and urine came back normal- no metabolic issues. We are still waiting on the chromosomal tests- I’m sure that will take awhile.

So we’ll keep plugging along- it’s a marathon, not a sprint, right? Our next goal- independent sitting. G’s probably still a few months from reaching that goal, but we are working hard. Our newest therapy tool- a diaper box. Gotta love free equipment!


Can I Clock Out Every Once in Awhile?

 I love being a stay at home mom and I know I have it good. For the most part, I let G’s whimper in the monitor be my alarm clock in the morning and I am so grateful that we can snuggle, play, and take our time getting the day started instead of rushing to daycare and a full day of work. I love being with my baby for all his giggles and grins, cries and even his dirty diapers. I know that there are a lot of moms who would kill to be in my position and then there are others that would go stir crazy. Grayson is my full time (with lots and lots of overtime) job, and I love my job.

 But every once in awhile, I need a break. I need to take my mommy timecard and clock out.

And by a break, I don’t mean the few hours every afternoon when he’s napping. I mean I need to get out of the house and not be in charge.

Ryan works really, really hard so I can stay home with Grayson. He leaves the house at 5:30 AM and on a non-game night, gets home around 6:30 PM. If he has a game, it could be anywhere from 9:00 to after midnight when he rolls in. During football season, he works 7 days a week and softball season (now) usually 6 days. He loves coaching and he loves his family, but it’s frustrating to have him gone so much. It makes me sad that he sees so little of his son during the week (I try so hard to keep G awake until Daddy gets home but the little guy is so tuckered out by 6:00 that I’m often not successful).

I’m having a hard time with Ryan’s job. Like I said before, I need to get out of the house. I am trying so hard to learn to be a decent cook, but taking Grayson to the grocery store is difficult- he can’t sit up in the cart and doesn’t tolerate the snap-and-go stroller very well. I desperately need to get my eyebrows waxed and my hair cut, but obviously can’t do that with a baby.

I do have help- family has been wonderful and I’ve had lots of offers from friends willing to help. I need to get better about taking friends up on their offers. Why is it so hard to ask for and accept help?

I saw my counselor today- she suggested (as have several other people) that I look into a mother’s day out program. She helped me realize that if I had some time for me I will probably be less resentful of Ryan’s hours at work. She was also very happy to hear that we’ve decided that Ryan is not going to teach summer school this year. I’m excited to have him home to have some real family time, at least for about 6 weeks until football season starts.

I really hope this doesn’t sound like I’m whining. Sometimes I feel really guilty that I feel overwhelmed and stressed and want time away, because I’m getting to do the job that I’ve always wanted. But everyone should have some time off-right?

Just wanted to share a little adorableness…Ryan’s mom stayed with G today when I went to my appointment- this is what I came home to. Oh, he is just so darn cute.

I Heart Nice People

I just wanted to share some acts of kindness I have received over the past few days. What a blessing!

Denise, the owner of WT (and my friend), went with me to Texas Children’s TWICE in the last week for morale support. Grayson had to have a lot of blood drawn for genetic testing that was ordered by the neurologist. The last time he had to have blood drawn, I went by myself and it was traumatic. We went last Thursday and they couldn’t get a vein. I do NOT like my baby to be stabbed with a needle with no results! So we had to go back yesterday when the really good blood-drawer was there (shouldn’t they all be really good if they are working with babies and kids?). Thankfully, this time it worked. Thank God Denise was there because she was totally the assistant- grabbing syringes, twisting lines, holding screaming G down while they were getting their million vials of blood. She made the whole experience so much less stressful.

This morning, I met a friend at Panera Bread for breakfast before Bible study. This sweet friend has been so great to talk to about Grayson- she has a precious girl with a lot of medical issues. She has given me lots of tips on how to talk to doctors, tricks on dealing with insurance, etc…I am so grateful I’ve gotten to know her. Anyway, I ordered my bagel and coffee and even though there were more people in line, the sweet woman who took my order saw I had G and told me she would fix my coffee for me and bring me my breakfast at the table. Such a small gesture of kindness, but it really meant a lot to me (and saved me from having to balance a carseat on one arm and a bagel and hot coffee in my hands- probably not a good combination).

In the course of one of our discussion topics at Bible study this morning, one of the leaders told me I was beautiful. I have been feeling particularly non-beautiful for awhile now, and I don’t believe her (my self-esteem is fine, I just feel like a Ihadababylessthanayearagoandreallyhaven’tdoneanykindofworkoutinIdon’twanttoadmithowlong-blob). It was very sweet of her to say though.

Last week, G’s therapist brought us three cans of formula to try (their office had been sent some by Similac and they were looking for babies that could use it.) It’s NeoSure, which is already beefed up to 22 calories/ounce, which is what we are feeding G to get him to gain weight. She asked us yesterday if we liked it and if we’d like some more. Yes please! I went by their office today and they gave me a box with TWELVE cans!!! Just because I’m curious, I looked up on Amazon how much it would have cost us. 15 cans would cost $224.85! SCORE! (I wish this meant I had $224.85 to spend on something fun. Unfortunately, it doesn’t).

So many of you have been so sweet to comment on my posts–thank you! Your comments are so encouraging and mean the world to me!

Our Easter in Pictures

We had a wonderful Easter weekend! A few weeks ago, I made an Easter plate- the chick is Grayson’s foot and the cheeks of the bunny are his teeny tiny tushy-cheeks!
Saturday, we were invited by a couple at church to a fabulous “Eggstravaganza” at their home. The had a big egg hunt for the kids, popcorn, cotton candy and hotdog vendors, bounce houses, the Easter Bunny and a train! It was amazing and we were so excited to be a part of it!

G was so impressed with the train that he fell fast asleep

Hanging out with Daddy
 G wore his chick jammies to bed, and I had to take a quick picture of him in his lamb swing wearing his bunny hat- I think we covered all the Easter animals!
Our Reluctant Easter Bunny:
Some sweet pictures we took before church Sunday morning:

Happy Easter Everyone!

7 Months!

Mr. Beautiful Blue Eyes

I’m a little sad writing this post, because to me, seven months sounds so much older than 6 months. I rocked G an extra few minutes last night before putting him to bed as a 6 month old for the last time.
Important stuff in Grayson’s world:
Food: Solids are still a challenge, but so far, G’s favorite are pears. I like pears too because they are far less messy than sweet potatoes and smell better than bananas. We are feeding him 25-30 ounces of formula/day, beefed up to 24 calories/ounce. We go back for a weight check and consult with his pediatrician next week, and I’m hoping he’ll be back on his growth curve! At his endocrinology appointment on Wednesday, he weighted 14 pounds, 9 ounces.

Diapers: I ran out of size 1-2 and didn’t want to buy another box, so we are officially into our stash of size 2s. They are a little big, but are working!

Clothes: Almost all 3-6 months or 6 month clothes. I did buy him some 9 month jammies for the length and they seem to be more comfy than the 6 month ones.

Favorite new baby contraption: The Excersaucer! G’s nursery teacher told me how much he liked it at church, so we brought ours out to try at home. He’s wobbly and I have to stuff blankets around him to keep him from falling over, but he loves it! Such a big boy! (And notice how well he’s holding his head up!)

I love his expression in this picture- so proud of himself!

Favorite new hobby: Having our friends over for playdates and going swinging at our neighborhood park!

Two cool dudes at the park

Sleep: Still going great at night, and this month’s big accomplishment-Grayson is napping in his crib! He’s put himself on a little schedule; one or two short naps in the morning and a long one (2-3 hours) in the afternoon. He prefers to be on his tummy, which I am totally not freaked out by anymore (thank goodness for video monitors!)

Toys: Grayson seems more and more interested in toys every day. He still isn’t grabbing at toys on his own, but loves when I put a rattle or one of his small stuffed animals in his hand. And as my mentioned in my last post, his favorite new toys are his feet! He also loves to laugh and be silly- here’s a video of his infectious laugh:
Happy Seven Months Little Man!

My New Normal

I think back to a year ago- I was pregnant, had just found out that Baby Baker was a boy, and was anxious and excited for the school year to be over. I am trying to remember what I thought my life was going to look like with Grayson- certainly I had no idea the rollercoaster of parenthood would have the twists and turns that ours does.

We saw another specialist today- a pediatric endocrinologist. And I’m sitting here thinking about the fact that for me, it wasn’t odd, or strange, to be going to an endocrinologist with my almost 7 month old. For me, it wasn’t weird that we saw a neurologist last week and had an EEG on Monday.  I’ve gotten used to wheeling Grayson into doctors’ offices, handing over my credit card and insurance card, and filling out paperwork as fast as I possibly can before he starts crying to get out of his carseat. I’m no longer apologetic when my baby is crying in waiting rooms, or while doctors are explaining complicated brain functions to me. I just bounce and shush G while learning as much as I can about the functions of the pituitary gland. My new normal is scheduling playdates around therapy sessions and making doctors’ appointments during naptime.

My new normal is also quickly becoming one of faith and being somewhat content with the unknown. I’ve learned in the last four months that doctors don’t know everything, and that a lot of their explanations are educated guesses. The endocrinologist today gave Grayson a diagnosis- Septo Optic Dysplasia, which is what the opthamologist suspected based on his observation of G’s optic nerves and the MRI. However, his blood test didn’t indicated any of the pituitary abnormalities associated with the disease. She warned me that just because his pituitary gland is functioning normally now, it may not in the future. She wants to run more bloodwork around his birthday. Looking at the symptoms of SOD, G has a LOT of them, but those symptoms could also be symptoms of other things.

I thought I would be relieved to hear a doctor give a “diagnosis” but I wasn’t. I think to me “diagnosis” means we know what’s wrong, we know if we can fix it and we know what the future holds. Nope, nope, nope. Septo Optic Dysplasia and Grayson Baker Syndrome (as diagnosed by his neurologist) both point to the same road- a road that isn’t very well lit, and we have no idea how straight and scenic, or windy and trecherous it is.

So I’m leaning on faith- faith that God knows what he’s doing and he has an amazing plan for my little dude. Faith that even though my new normal isn’t “normal”, it’s filled with love, hugs, kisses, and days spent with this amazing little baby who discovered today that his feet are delicious.

Dear Izzy,

Four years ago today you entered this world, just a tiny girl who fit in the palm of your daddy’s hand.

You were literally the “pick of the litter” with your honey colored coat, white spots on your nose and paws, and sparkling blue eyes.

You were the cutest little puppy, and we bought right into your antics, because who could stay mad at this face?
For four years, you have driven us to the brink of insanity challenged us, and most days we want to sell you to the circus (but as your daddy says, they don’t want you), but at the same time, we couldn’t imagine life without you.
Oh, Izzy, my little baby bad girl, I love you. You are four now, which my sources tell me is when dogs are supposed to start behaving. But I’m not holding my breath.

Happy Birthday Boo Boo.

Really Bad Hair Day

This morning was Grayson’s EEG at his neurologist’s office. I had several sweet offers from people willing to go with us for support, but I decided since the test wasn’t invasive or anything where G would get stuck with needles, we could go by ourselves.

What the heck is this all about!?

Grayson was tired and cranky when we got there, which ended up being perfect because I fed him a bottle while the tech marked on his head with a red pen and then stuck 25 wires all over his head. She then turned off the lights and he fell fast asleep. The actual test was 1 hour and we snuggled in a big, comfy (REALLY comfy actually) recliner the whole time. G slept and I watched The Resucers, one of my favorite Disney movies from childhood. At one point, for a few minutes, the tech flashed really bright lights by his face, which I thought would surely wake him up, but they didn’t. I was kind of sad when the test was over, because he was sleeping so soundly on my chest and snoring so sweetly.

Sound asleep
The tech took the wires off his head- oh my goodness, Grayson’s hair needs a good shampooing! The red pen smeared everywhere, his head was sweaty and there were globs of the adhesive stuck in his hair. It was quite a sight! I didn’t dare take him anywhere after that because people probably would have called the police- it really does look like his head is all cut up!
But I don’t want to wake up!
Well, I guess all that sleeping on his momma wore him out because Grayson wanted no part of playtime when we got home- it was bottle and in the crib for a nap. I’ll probably have to wash his crib sheet because of all his hair-nastiness (no, I didn’t bathe him when we got home- I’ll just do it tonight).
The EEG tech said we won’t get a call about the test unless they find something and Grayson needs to be seen sooner than our follow up with the doctor, which is in June. So I guess no news is good news if we don’t hear anything.
I have to find a time this week to take Grayson to TCH to get blood drawn- ugh, NOT looking forward to that. I doubt there will be a big comfy recliner and snoring baby during that test!
Seriously people, just let me sleep!

Friday Afternoon Funny

This is Grayson’s favorite toy- a silver rattle. He is working SO hard to learn to pick it up on his own.

When it’s in his hand, he holds on tight and attempts to put the entire rattle in his mouth.

Playing with his rattle is serious business. I was snapping away at the camera, and then…

Ha ha ha! How did THIS happen? He was so perplexed! Bless his sweet heart.

Neurology Appointment

This morning, Grayson had his appointment with the pediatric neurologist. The doctor was quirky, funny and smart, and I liked him. He examined Grayson head to toe, which is what I have wanted for a doctor to do since the beginning. When I mentioned that Texas Children’s endocrinology wouldn’t see him because of his ‘normal’ blood results, his response was, “He’s a person, not a blood test.” I was sold.

We were with the doctor for quite awhile, and he explained G’s MRI report. Basically, the MRI showed that his brain is lacking in white matter, which carries the messages. This explains a lot- his delays, his vision impairment, and his trouble adjusting to eating solids.

A few things we learned:

  • G still has newborn reflexes he should have “lost” months ago
  • G is at risk for seizures. He may be having little seizures already that we haven’t recognized. Scary.We are having an EEG of his brain on Monday.
  • His vision impairment is not the cause of any of his delays; it is another symptom of his neurological issues
  • G’s tiny head circumference indicates his brain is not growing properly
  • The doctor referred us to an endocrinologist that will definitely see us
  • The doctor ordered more blood tests, including chromosomal testing
  • G will have another MRI sometime between 10 months and 2 years.

I asked him if G’s condition had a name. His answer: “Grayson Baker Syndrome”. Basically we won’t know how all these puzzle pieces fit together in a month, or even in a year. It’s going to be a long journey and there’s no way right now to predict what the future holds.

It’s scary, overwhelming, and sad. I’m exhausted. Then I got the bad news that my good friend/teaching partner was laid off today. I am heartbroken for her.

As hard as all this is, I’m so grateful we are finally getting some answers and have found a specialist who is proactive and is really trying to uncover everything he can about Grayson.

Rebecca, per your request, here’s a really cute picture!

My drooling is out of control!