14 Months!

Dear Grayson,

Oh, my sweet little Monster Man. What a month it has been! You have now had your tube for a whole month, and for the most part are doing really well with it. I do have to pry the tubing out of your death grip and razor sharp teeth every once in awhile, but you generally leave it alone. And OH MY what a difference it is making! You are growing and filling out before my eyes! You now have an adorable little double chin and chunky-monkey thighs- I love it! You weigh right around 18 pounds now, depending on what doctor we are visiting and the reading on their scale (hmmm). I need to weigh you on our home scale and see what it says. We’ve FINALLY moved to size 3 diapers and you are in all 12 month clothes. Hooray!

This month, you have become so chatty- you babble constantly and I love when you say Mmmmmm-MA! Mmmmmm-MA! You also say Ba and occasionally Ga. Food is still not really your thing- you will usually accept a bite or two of whatever I offer you but then lose interest or just flat out refuse. I guess when you are fed 24 hours a day you don’t have much of an appetite. We go back to the doctor this week and I am anxious to find out what your future holds in terms of the tube.

I know this letter is a week late, but we were on vacation last week. You got to meet your three new second cousins, see your great grandparents, visit with your aunts and uncles, and celebrate Thanksgiving with some of the people who love you most. We are so, so thankful that God has blessed our family with you.

This coming month is going to be busy! We again have lots of doctors appointments, therapy sessions, and a possible surgery that will help the doctors get closer to figuring out a diagnosis for you. On top of that, it’s Christmas time! Yesterday, we decorated our house for Christmas and are going to do our best to make it a wonderful Christmas for you. Of course, if Santa brings you any more toys, he’s going to have to buy Mommy and Daddy a bigger house because there is no room for any more Grayson-stuff in this house!

Happy 14 months Grayson- I love you so, so much.

Love,
Mommy

P.S. I’m sorry I lost your 14th month onesie sticker. I’m sure it will turn up…when you are no longer 14 months 😦

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It’s Good to Be Home

We just got back last night from a week long trip to Charlotte and Savannah. I’ve been in recovery mode all day.

Traveling with a 14 month old is hard. Traveling with a 14 month old who has an NG tube, can’t sit in a restaurant high chair, and generally isn’t into entertaining himself is exhausting. When we got home from vacation last night, I really wanted to kiss our swing, excersaucer, Bumbo seat, and every other baby contraption that I swear I will never take for granted ever again!

The Highs:

  • Meeting Grayson’s three new second cousins who were born since we were last in Charlotte. Gotta love a house full of babies!

G with 2 of his new cousins, Anna Merritt and Caroline
  •  Visiting with my grandparents, and seeing them love on Grayson.
G was so calm and sweet in Grandaddy’s lap
  • Savannah- seeing where my little sis goes to school, the shopping, the parks, the architecture, the food (yummy Paula Deen Thanksgiving dinner!).
My little turkey

  • Grayson being serenaded in a square by this guy…and I SO wish I had videoed when he finished singing and blessed Grayson and told us he would be praying for him and that he’s going to “be ok”.
  
  •  Family. My parents who so generously took us all on this trip. My brothers and sister and sisters in law I don’t get to see enough. My own little family of 3. It was nice to be all together.
The Lows:
  •  Airport Security. We had to go through it 3 times, and yes, we survived, but what a pain. The first time, we didn’t disconnect G’s tube, so he had to have a pat-down in the stroller. The second time, we disconnected him and put everything through the scanner. They searched every single item in our bag- feeding bags, formula, syringes, medication, extra supplies. Somehow we left missing a bag of syringes- grr. The third trip was the worst. Not only was every item searched, but the woman tested each bottle of medication (including Tylenol). Then (and please someone smarter than me explain the logic of this) when I asked if G’s feeding bag of formula was going to be tested, she said, “No, I don’t want to open it but I have to do a pat-down on you instead.” Umm…ok. (Because my master plan of putting explosives in a feeding bag and using a baby as a decoy surely will be foiled by patting me down instead of testing the formula.) Anyway, I have now officially been violated by TSA. Yes, they patted me down everywhere. Several times.

  •  The Savannah hospital emergency room. Yes, we had to go get the tube put back in. We tried to do it ourselves, but as I pushed the thing down his nose, it didn’t go into G’s stomach, but came out his mouth instead. Awful. I wanted to throw up. The fact that all these doctors think that I can do this at home is just a joke. Not going to happen. Anyway, off the the ER we went- again. And let’s just say I am now very thankful to live in a city with world class hospitals, because, yes, there is a difference. A huge difference.
  •  Confused, tired baby. Baby who didn’t have his bed, his toys, his equipment. Baby who wanted to be held constantly, and who cried and cried when he wasn’t the absolute center of attention (and even sometimes when he was).

So, I’m glad we got the chance to be with family, and to explore a new city. But, I’m done travelling forever for a long time. If anyone wants to see us, they can come to us!

Save the Salad Bar!

Grayson, my mom and I had lunch with my grandparents yesterday at their retirement community in Charlotte, NC. Grayson got fussy during the meal, so we took a walk in the lobby for a few minutes. There was a large poster display of the proposed new dining hall renovation for the community, and post-its for the residents to leave comments of their opinions of the plan on the board.

(Ridiculous! Regressive! Insane!)(Creating Social and Physical Barriers)(NO SALAD BAR)(Too Small)(Bah Humbug!)(Colors are too dark)

HILARIOUS. I just hope there isn’t a riot during the Thanksgiving meal on Thursday.

Happy Thanksgiving, and Bah Humbug!

Genetics Appointment

Grayson’s genetics appointment was this morning. We’ve had this appointment for months and months, and were anxiously waiting to finally talk to the doctor about all his issues. The past few weeks I’d been worried that we’d come out of the appointment underwhelmed and disappointed with a lack of answers. Well, fortunately that wasn’t the case. We have a LOT of information to process, both intellectually and emotionally.

We liked the doctor a lot. He presented a lot of complicated medical information in a way that we could (mostly) understand and answered my questions and patiently repeated and clarified anything I asked him to. He was sweet and personable with G-Man (which I have come to realize is very important to me). And he seems to be aggressive and interested in figuring out the cause and treatment for G’s condition.

We started with a complete medical history, both for Grayson and Ryan and me. It always catches me off guard when I give a summary of all we are dealing with- in everyday life, I rarely focus on all of his issues at once, but it tends to overwhelm me when I talk about all of them: developmental delay, failure to thrive, vision impairment, seizures, low muscle tone, eating issues, gastric emptying delay, and possible hearing and speech problems. It’s a lot.

He also did a physical exam and made a lot of notes. Several things he pointed out: G’s reflexes aren’t normal (you know, when they tap your knees), he still has the Babinski response- his big toe goes up when you stroke the bottom of his foot (babies usually lose this reflex at about 6 months), and he has Clonus. I had never heard of Clonus, but he showed me what it was- when he flexed G’s ankle, it almost looked like it was vibrating- the doctor said he counted 25 movements before it stopped (less than 5 is normal). All of these indicate that his central nervous system isn’t firing correctly, which we knew.

So, after reviewing the bloodwork we’d had drawn previously, his symptoms, and the physical exam, the doctor told us he suspects Grayson has one of two disorders: Mitochondrial disease or Congenital Disorder of Glycosylation. I know quite a bit about Mito, since that’s what his neurologist has brought up before, but I had never heard of CDG. I still know almost nothing about it, and am in no mood to consult Dr. Google tonight. But apparently there are several types of CDG and only one is treatable and it’s highly unlikely G has that type, since it’s usually marked by constant diarrhea (which G does NOT have). G also does not have 2 physical characteristics of CDG- inverted nipples and fat pads on his butt, but this does not exclude him from having it. Thankfully, for this disorder, it’s a simple blood test to diagnose, which we did today. We should know if he has CDG in about a week.

If Grayson tests negative for CDG, which is likely, he will be tested for Mitochondrial disease. Mito is a little trickier- it’s very difficult to diagnose, and it’s not just a simple bloodtest. He will have to have a muscle biopsy, which is a surgery, under general anestheisa. The doctor was honest- it’s invasive, will leave a scar (on his thigh or calf) and is a tough recovery. They will test the muscle for a lot of things which will take about 10 weeks. IF the biopsy comes back showing mito, then we have to narrow it down to which gene(s) are affected. Here’s the kicker- there is a blood test for that which identifies the defective gene out of MILLIONS and MILLIONS, but it’s only been out for ONE WEEK and costs $25,000. Yes, your read that right. Twenty five THOUSAND dollars. Insurance, are you listening? Oy. The doctor said he’s done this test in clinical trials and has diagnosed a number of children with it.

Of course we are sad, anxious and scared that G will probably have to have the biopsy. And to make matters worse, he may have to have 2 surgeries in the coming months if he ends up needing a G-tube. But, we have to do everything we can to learn the cause of his problems, so we know how best to help him. I almost cried at one point during the appointment- he was talking to us about having a child with special needs and how we need to prepare for this to be a lifelong journey. He was absolutely upfront and honest- Grayson will most likely have significant learning disabilities and may not walk or talk for quite some time. Of course I already knew this, but hearing a doctor say it was different. Tough.

I debated whether or not to write about this next issue, but I’m an open book and it helps me to write and just get it out. Both CDG and Mito are usually inherited. Usually, not always. I don’t completely understand the complexities of how, and in what combinations, but what I do understand is that there is a definite possibility that any of our future children could be affected by the same disorder. If whatever he has did come from us, at best, we would have a 25% chance of passing it on again, at worst, 100%. If and when Grayson is diagnosed, Ryan and I will be tested. The doctor talked to us about several options- an amniocentesis during pregnancy, which really won’t be an option for us because we would not terminate a pregnancy, or IVF with genetic testing of the embryos before implantation. And of course there is adoption, which we do have a heart for.

But for now, we need to focus all our attention, energies, resources, and love on Grayson. He’s amazing- with all he goes through every day, he still manages to give us that heart-melting smile and silly giggle. I am determined to give him the best possible life- whatever it takes.

And now, just because, here’s a couple pictures of our cutie-pie little trooper.

I Just Don’t Have Time For You

No, not YOU. I will always make time for the sweet friends who read my blog and offer so much support. YOU are not who I am talking about.

We’ve got a lot going on right now. The approaching holiday season, 5 doctors appointments in the next 3 weeks (including genetics on Thursday), several therapy sessions a week, a high maintenance baby with a feeding tube, and a trip to North Carolina and Georgia next week. I’m also trying to fit in working from home, several painting orders, time with my husband, and time with friends.

But, if you are one of the following, so sorry, but I just don’t have time to mess with you right now.

  • My depressed dog. Hank, really? Everyone knows how much I love you and think you really are the coolest dog ever, but I cannot deal with your depression anymore. I KNOW we left you for two weeks, but it’s not like we were vacationing in the Caribbean.  We were in the hospital with your very sick little brother. And hello, when we do leave you, it’s at your favorite place on earth, other than your Dad’s leather chair. And I KNOW things are tense at home a lot of the time now, but your parents are adjusting to our “new normal” too, not just you. Please stop eating diapers- it’s not only disgusting but we do not have the time or the funds to take you to an emergency vet (well, let’s face it, or the regular vet). And please stop counter surfing, refusing to eat your dog food, destroying your brother’s toys, and pacing instead of going to sleep at night. I love you, but I do not have time to deal with your mental state right now.

  • The Drivers Licence Office. I tried. A sweet friend offered to watch Grayson today while I schlepped down there to renew my licence that expired a month ago. I pulled up and the line was literally wrapped around the building- at least a 4 hour wait. What mom has 4 hours to wait in a line with a mob of people who either look like they just escaped from prison or live under a bridge somewhere? Where are all the normal people- am I the only one who has to get her licence renewed? (And yes, I looked into doing it online. Since I did it online last time, this time I have to go in person- of course.). So WHO KNOWS when I will be a legal driver again.

  • People who send unhelpful text messages. Grayson’s home health nurse, who we have met once, was sick last Friday so she didn’t come. Fine. Really we don’t need her at all- we can go to the pediatrician during the week if we have an issue with the tube. So I get a text message from her this afternoon: “hi elizabeth, I’m still sick…flu! I don’t want to share with Grayson. I will call u when I’m well. if needed can continue to go to ER for replacement.” Yes, that’s SO HELPFUL since every time we go to the ER it’s $350! Thanks for the tip. Sheesh.

Disclaimer: Notice I can only come up with three real annoyances in my life right now? I am loving all the “Thankful” posts on Facebook and blogs this week- and have so much to be thankful for right now that I admit I’m a little overwhelmed by the kindness of people and am kind of at a loss of how to express my thankfulness appropriately. Am definitely planning a “thankful” post or two in the coming week, but tonight I just wanted to vent a little! Thanks.

The Truth

For those of you who think I am so strong, that I am handling all this so well, I’m here to tell you if you were a fly on my wall this weekend, you might think differently.

I pretty much lost it both Saturday and Sunday.

A lot of it is I’m just tired. We are getting up every 4 hours to administer meds and refill formula. But my formerly perfect 12-13 hour a night sleeper’s world has been turned upside down and he’s having trouble falling asleep and staying asleep. The last two nights he’s woken up in the middle of the night screaming- I’ve changed his diaper and he’s gone back to sleep, but he’s restless. And I am too.

The stress has built up as well.

Saturday morning, Grayson pulled his tube out. We called the pediatrician’s office, because they have Saturday hours, but several practices in the Katy area rotate locations. Of course our pediatrician wasn’t on call and we had to call another office. They absolutely refused to put the tube back in, and the receptionist was extremely rude to both Ryan and me on the phone. Ryan actually talked to the doctor on the phone who said he couldn’t do it because we would need a chest x-ray (which ended up being completely untrue). We called several urgent care clinics, because at the hospital they told us an urgent care could put it back in. Nope. So our only other option was to go to the ER, at the tune of $350.

I asked the doctor and nurses in the ER (who were absolutely wonderful) to show me how to insert the tube if it happens again on the weekend. They had me do it, and it was awful. Awful, awful, awful. G was screaming, and I gave him a nosebleed as the tube went down. I pray I never have to do it again, and especially not on my own.

Sunday morning (stupid daylight savings) G woke up at 3:30 am and I just couldn’t get him to stop crying as I changed his diaper. I calmly handed him to Ryan and went and buried myself under the covers. Thankfully, I knew I had reached my limit and avoided losing my temper with my child. I got a few more hours of sleep, but woke up still in a funk. And then Izzy snatched part of my breakfast from my hand and I just lost it. Threw her outside, slammed a few doors, and was just half screaming, half sobbing.

So I’ve now officially had my breakdown. Moving on.

I took G to a new GI doctor this afternoon. I was impressed. A med student and resident listened to my whole story and the doctor asked lots of questions about his medical history, hospitalization, and eating. His plan is we should continue the continuous feeds from the tube for another month, possibly upping the rate on the pump and giving G a 2 hour “break” each day, but feeding him at the end of the break to see if he has any appetite. His opinion is that the gastroparesis (delayed gastric emptying) is probably caused by neurological issues- proving further that everything ties together. We will see him again the week after Thanksgiving to monitor weight gain and eating progress. When I asked about the G-tube surgery, he told me to “slow down”- take this one week at a time and remain optimistic that G will not need it. Although he did think 50/50 chance that he will need it is probably accurate.

So I feel like I’m just surviving day by day right now. I’m equally horrified that G may need surgery and grateful that there is that option if he is unable to get the nourishment he needs through his mouth. I’m excited and nervous about seeing the geneticist next week- excited for answers (but also nervous for answers). I’m terrified G is going to pull the tube out again and I’ll have to put it back in and will put it in wrong and it will go in his lung (yes, this could happen). We bought G a backpack yesterday to hold his pump and tube so we can get out and do things now, which helps. I have incredible friends who have literally saved my sanity the last few weeks. And I know this will get easier. But for now, I just need some SLEEP!