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.

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.

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.

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.

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!?

Sound asleep

But I don’t want to wake up!

Seriously people, just let me sleep!

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!

This is Pippi, my first dog. I bought Pippi when she was 7 weeks old, just a tiny white ball of fluff. Pippi was a ball of energy; she was my workout partner, my baby, my friend, and a lot of times, my comforter.

Today is Pippi’s birthday. She would have been 6 years old. We lost Pippi on Christmas day 2007. She got under the fence at Ryan’s house (we weren’t married yet) and we never saw her again. It was heartbreaking.

I want to believe that Pip was scooped up by someone who really needed a friend that day, and that she’s living the life of luxury on a huge farm somewhere.

I’m sad that Pippi never got to meet Hank or Chloe, or Grayson, and never got to go to Waggin’ Tails. She would have LOVED Waggin’ Tails.

Happy Birthday sweet little girl. I love you and miss you.

Last night, I started feeling run down, tired and a little achy. I really thought it was the result of my (probably a little dramatic, but totally justified) annoyance with the electricians who were supposed to come in the afternoon but came at 6:15 pm. 6:15 pm is NOT the afternoon, people! 6:15 is also Grayson’s bedtime. Yes, I know, the world does not revolve around my baby’s schedule, but at 6:15, it should. So here they come, with their LOUD drills and beeping devices to try and figure out why our breaker keeps tripping, which has caused us to have tragically been without a TV in the living room for a week (which in turn caused me to not be able to watch the Grey’s Anatomy musical until today-actually, it wasn’t that horrible). The dogs wereIzzy was going nuts, Grayson was crying, and Ryan was still out slaying dragons, er, dealing with a psychotic female coach (another story for another time).

I actually had a plan for that hour- put G down, put dinner in the oven, and for God’s sake TAKE A SHOWER so I wouldn’t greet my husband completely covered in and smelling like baby bodily fluids. Instead, I ended up holding/rocking/balancing G on one knee and Izzy on the other (which is more difficult, this baby or this dog? I have yet to decide) until Ryan came home, to the beeping, the drilling, the crying, the Izzy-whining, and the fluids.

Grayson, being his bedtime-rockstar self, went down just fine despite the chaos. Ryan took Izzy for a walk while the other three were banished to the backyard (yep, we reward bad behavior around here), I made dinner, and the electricians concluded after taking apart every single outlet in the living room that the problem is the ceiling fan. Oh and they can’t fix that now. Of course. But they unplugged whatever the problem was and now we have TV and mostly working outlets in here. I’m thinking: whatever– just please leave, and take your beeping with you.

So last night I was just feeling crappy, and then this morning even crappier. Last week, Ryan had a sinus infection and got a Z-Pack so I figured I just caught it from him. Grayson and I loaded up and schlepped over to the HEB Redi-Clinic to get my Z-Pack and move on with our day. Not so fast- I have strep throat. What?! I haven’t had strep throat in years, and I was feeling perfectly fine 12 hours before. So I’m on Amoxicillan for 10 days, although I won’t be contagious (and hopefully will be feeling better) by tomorrow.

The P.A. who wrote me the prescription reminded me to use back up birth control while I am taking the medication. She said she has a nephew who is the “result of a really bad sore throat”- ha ha! How would you like to be that kid and known as that?

I did call Grayson’s pediatrician to ask if I should bring him in to be tested- who knows how many strep germs  kisses have covered his sweet face since I was infected. The nurse said just to watch him and his temperature, but it’s rare for a child under 2 to get strep. Finally, some good news! Poor G is still dealing with snot, snot, and more snot, but no temperature and isn’t acting sick. Ryan has a game tonight and is taking 50 high school kids on a school bus to San Antonio tomorrow (aren’t you jealous?) but my mom was sweet enough to come over and entertain Grayson while I sat like a lump on the couch and tried to will the sick out of my body. Now she’s putting Grayson to bed while I try to wrap up this already way too long blog post, which really has no point except that I’m sick, and I’m hoping I won’t be sick tomorrow. Grayson got invited to his first birthday party, which is tomorrow morning, and he really, really wants to go (he told me so).

Happy Weekend Everyone!

I know it’s supposed to be Wordless Wednesday, but I have a lot to say today!

In reference to yesterday’s post, I found it annoying interesting that this was the topic of my weekly babycenter.com email that popped up in my inbox this morning:

Weird, huh? Although about 15 hours too late, BabyCenter! (Yes, I know, I should have just listened to my mother).

Anyway, today was an interesting day. Grayson woke up snotty and cranky, and got snottier and crankier as the day progressed. The last time G had a cold, it lasted 3 weeks. Fabulous.

His OT and his case manager both came early this morning to work on eating. I was hoping G would show off his love of sweet potatoes, but Mr. Cranky apparently wasn’t in the mood. When I put the food in his mouth he kind of looked at me like, Really? You want to do this now? And why are these women staring at me while I eat? Then he proceeded to throw a fit and fall asleep (falling asleep is his coping mechanism- I think he’s onto something). It wasn’t all horrible though- the therapists did comment several times on his improved head control (hooray!) and the fact that he would let me put a spoon in his mouth. Baby steps.

Since I am an expert scheduler and time manager for Grayson (ha), not 3 minutes after the therapists left (Grayson is still ‘coping’ at this point) the representative from the Division for Blind Services knocks on the door for her appointment. I answered the door and I shouldn’t have been surprised, but I was, that she is blind. I’ll be honest, I didn’t quite know how to invite her in/give her directions how to get to our living room. She had a cane, but ended up going the wrong direction in our house-but we made it to the couch. She said she has a guide dog but forgot to mention it on the phone so she didn’t know if I’d be comfortable having a dog in our house (ha! ha! ha!). I told her about our four dogs and she thought it was so funny that they go to daycare most days. She promised to introduce Grayson to her dog, Cash, the next time she comes out. Sidenote to Brittany- I was laughing to myself when she said her dog’s name is Cash and kept picturing your Cash being a guide dog. Oh dear- ha!

I really liked this woman, and I really liked her braille computer (fascinating) but the visit was strange. I guess I thought it was going to be an evaluation of Grayson, but it was more of me signing release papers so he can get services through their agency. It’s a really great program- basically their goal is to equip blind and visually impaired kids to be independent and employable someday. They have all kinds of activities for kids like a blinking Easter egg hunt, horse therapy, summer camps, etc. I’m excited for Grayson to get involved when he gets older.  The strange part of the visit was when she started talking about payment. She said they bill families for their visits (I’ll get a bill for today) but they have no way of enforcing collection of the bills. So basically we can pay the bill if we want to, but we don’t have to, and she won’t know if we pay it or not (????). I asked her how much the bill was going to be. She said it depends on our income, but last week she sent a bill to a family for $14. I told her if we get a bill for $14 she can count on us paying it. Strange. Oh and the whole time she was talking, I was trying to figure out how she got to our house. When she left, I saw a man in a van pull into our driveway and pick her up. Then I felt bad that that man was sitting in his van for an hour- he could have come in. Oh well.

Grayson’s pediatrician called this afternoon with great news- they got him an appointment for next week with the neurologist! I need to get busy with a list of questions for him so we can hopefully get as many answers as we can when we see him.

Grayson also took a 3 1/2 hour nap this afternoon (on his tummy- aren’t you proud of me for just letting him be?), and he would have slept longer but I woke him up at 5:45. He was pissed. We went outside with the dogs for a little while to calm him down, but he just fell asleep on my shoulder. I wasn’t sure what to do then, so I just followed our routine and put him to bed at 6:45 and he went right back to sleep. I’ll take it!

This is a picture from Monday’s visit from G’s vision teacher. She did “sand painting” with him- his first art project! And yes, it is proudly displayed on our refrigerator. I just love being a mom!

If I’m going to brag about my baby, besides talking about how unbelievably cute he is, I brag about how awesome he is about bedtime. We have our routine- bath between 5:30 and 6:00, then if he’s home, Daddy makes a bottle and brings it in as we put on jammies. Then Grayson drinks his bottle, we rock for about 2 minutes, then I put him in his crib and he’s OUT- until about 4:00 A.M. There’s no drama or crying. He’s just a bedtime rockstar.

Until tonight.

Grayson has started rolling over to his tummy anytime he’s put on his back. During the day, he will sometimes nap on his tummy, which actually his OT encourages. Since all the experts recommend babies sleep on their backs to prevent SIDS, I always keep a close eye on G if he’s sleeping on his tummy. Tonight, I put him in his crib as usual, and he almost immediately flipped to his tummy and fell asleep. In the monitor, it looked like his face was smashed into the mattress and the top of his head was pushed against the bumper. It was making me nervous, but I could hear him breathing so I didn’t do anything.

I talked to my mom on the phone about it and she told me again that all 5 of her babies slept on their stomachs, and obviously, we are all still here. But I just couldn’t relax and kept checking the monitor every 2 minutes. Finally, so I wouldn’t drive myself completely crazy, in a moment of weakness (Ryan isn’t home tonight and he might have talked me out of it), I went in the nursery and flipped him back over. He didn’t wake up. Well, didn’t wake up that minute. 10 minutes later…

WAAAAAAAAA!!!!

Oh great. This has never happened before. I started going through my mental list of things to try, and I tried them.

Cry it Out- this one lasted 12 minutes. After 12 minutes of crying, each minute exponentially louder and more angry than the previous one, I caved.

Rocking/Soothing- yep, he fell asleep, but as soon as I put him back in bed….WAAAAAA!!!!

Bottle- “Thanks Mom, that was good, but I’m still not going to bed.” WAAAAA!!!

Finally, after an hour of Mommy Fail, I brought him out to the living room and stuck him in the swing so I could eat my dinner before I passed out from hunger. He immediately fell fast asleep, adorably sucking his thumb.

I ate dinner, took a shower, got the dogs situated, and then prayed hard that the “transfer” would be successful. Thankfully, God and Grayson had mercy on this exhausted mommy. Grayson stayed asleep, and is now peacefully snoozing away, in his crib, on his back.

I should have just left well enough alone. Oh well, live and learn.

Grayson with his Grandaddy (my dad)



Family Picture




With Aunt Brittany

Grayson behaved very well up until the point where we had to walk to the front. Then the screaming started. Luckily, he stopped during the “ceremony” but I didn’t hear a word they were saying because I was trying to keep him quiet by bouncing and whispering to him the whole time. Oh well.
Each family wrote a blessing for their child. Here is Grayson’s:

Grayson,
You are a precious miracle. God made every single part of you deliberately and with a purpose. We know that you are God’s child, and he has entrusted your life on earth with us. As your parents, we promise to love you, fight for you, teach you, and give you every possible opportunity to succeed. We pray that you will love Jesus Christ and love others, and we promise to set that example for you. We love you deeply and fiercely.

Love,
Mommy and Daddy

It was a very sweet, special morning for our family. Next week- back to the nursery!