Crisis averted.

I love all ya’lls comments to my venting post yesterday and your suggestions on what I should do. Thankfully, I didn’t have to sing at the top of my lungs or drag my screaming baby to annoy the whole doctors office staff.

And I got the paperwork. Signed, sealed  faxed, delivered.

Of course, it wasn’t easy. It never is. I actually called the office this morning, where I was told,  Of course we have a copy of the letter- it’s sitting right here…” (umm, so then what was that story about it being at the medical records scanning company for weeks and weeks? Whatever.) I told her I’d be there in an hour.

I was handed an envelop- hooray! Not so fast. I opened it, just to check to make sure it was what I needed. Ummm…the second page was BLANK. There were 2 essay type questions and only the first one was filled out. SERIOUSLY?! So now I’m guess I’m glad it never made it by mail.

So the stupid nurse, or assistant, or whatever she is, actually asked me what I wanted it to say. Because of course the doctor didn’t write it- it was just stamped with his signature at the bottom. So in hindsight, I should have just written the thing myself, then taken it in to get stamped, and we would have been done with this thing 3 weeks ago.

So now I’m really hoping the letter said the right thing. I actually got teary in the car when I was reading it, because it makes Grayson’s condition sound really bad. But I guess that’s what we want- it needs to be convincing that we need help. But still, it’s hard to see all these things listed in one place, using really big medical words.

I was told we should hear in about a week if we made it through this hoop and which hoop we will have to jump through next.

Why can’t people just do their jobs? I am beyond frustrated tonight.

We are applying for a benefits program for Grayson- MDCP. If he qualifies, it will give us tremendous financial support and services, which we desperately need.

There’s a long waiting list for this program- when I called and got Grayson on the list, he was number 23,000ish. No joke. It’s a 4-5 year wait. However, there is a loophole where medically fragile kids (which Grayson should be because of his G-tube) can skip to the top of the list- it involves a one night nursing home stay, probably in another city. Ridiculous, but we’ll do it.

We received the paperwork in the mail a month ago, and it’s due tomorrow. All it is is a form and letter that has to be filled out by one of Grayson’s doctors. Simple right? HAHAHAHAHAHAHA.

Since I feel G’s neurologist knows his condition best and I figured he’s done this before (the wording has to be specific) I asked him to fill it out and was very specific with him and his staff when it was due. This was 3 weeks ago.

I called last Tuesday to make sure it was completed and mailed and they told me it would be “mailed out tonight”- I put that in quotes because it was a lie. When I talked to our MDCP case manager Friday she had not received it. She told me to call again Tuesday (yesterday) to make sure she had it. I then called the neuro and left a message, which they didn’t return until Monday.

Monday- the neuro nurse called me and said it was mailed out Friday afternoon. So if that was true, it should have been in the office no later than Monday. I called Tuesday and left 3 messages, and 2 messages today, and our case manager finally called me back at 5:45 tonight. And guess what? She doesn’t have the paperwork yet.

Oh and the instructions say if it’s not in by the due date (tomorrow) the option to apply for this loophole is forever closed.

PANIC!

But besides the fact that the case manager didn’t return my call until I had left 5 messages, she is very nice and actually told me not to panic. She said since I am in contact with her she will give me an extension until next week.

So tomorrow, I am going to camp out at the neuro office until I can get a copy of the letter and I will fax it over myself. The thing I am worried about is when I talked to the neuro nurse Monday she said I can’t have a copy right now because they’ve sent it off to their medical records scanning company and it won’t be back for a few weeks. I have no idea if that is the truth or not- I am just praying somewhere there is a copy on someones computer or folder.

So needless to say, I’m a little stressed tonight!

And I know, I shouldn’t put up with this crap. But the doctor himself is awesome. Seriously, I don’t think we would be where we are in the diagnosis process if not for him. He’s aggressive, answers questions, and explores every possibility. It’s just that his office staff is horrible. So frustrating.

I seriously wish I had a secretary to deal with paperwork, insurance, and scheduling doctors appointments. I just want to take care of my kid.

Grayson has gone to bed before 5:30 the past two nights, and slept more than 13 hours. Usually I put him down right at 6:00, but by 5:00 yesterday and today his body language was begging me to put him to bed. As soon as I lay his body on that mattress, he was out.

He’s also been really difficult to take out the last few weeks. We had 3 playdates this week, and each one Grayson lasted about an hour and he started melting down- thankfully, I am in tune to his meltdown cues and got him out before things escalated too badly. Yesterday though, was really difficult- we went to the toy library with our OT, which was great, but Grayson was pretty hysterical the whole time we were there. And he couldn’t be calmed, which concerns me. This morning we had his 18 month well-check (nothing remarkable to report) and he was actually fine during the appointment, but he crashed in his crib for over 2 hours as soon as we got home.

Yes, he’s teething, and I realize that could be a big part of this, but I am worried it’s more than that. Toddlers (which I realize G is in age only) are supposed to get easier in terms of taking care of them, right? I feel like this is one of the hardest stages right now- G just seems SO tired and fussy so much of the time. His little legs are so stiff and it’s hard to get him in a position to play with his toys, and then his attention span with them seems minuscule. THANK GOD for his excersaucer and Veggie Tales music- Bob and Larry put a smile on his face (and save my sanity) each and every day.

My mind always goes to Mito- if indeed that ends up being his diagnosis-fatigue is a huge part of the disease and the impact on his life will be huge- I’m already seeing that. In a few weeks, the UMDF is having a day at a special needs amusement park in San Antonio. At first, I was thinking how fun it would be to take G. But then I realized- 3 hours in the car and then a day at the amusement park with no nap in his crib would equal disaster. The kids needs his sleep- in HIS bed- or he simply does not function.

I just feel so heartbroken for Grayson. Some days his struggles just seem so big. No wonder he’s tired.

Dear Grayson,

Happy Half Birthday to my little BIG guy. Seriously, how are you so big? You’re heavy (21 pounds!), tall (31 inches!) and the size on the tags of your clothes match your age exactly- wow!

God gave you a little half-birthday gift today- absolutely gorgeous, spring weather. We absolutely must take a trip to the swings this afternoon to celebrate. The only rain on your half-birthday parade is those pesky teeth that are finally poking through your gums, after almost a year of no teething activity. Ouch, ouch, ouch!

We had a super fun “field trip” planned this morning with your beloved teacher, Ms. Joan, who is moving away next week (we won’t talk about how sad we are). We went to a special needs toy library and picked out 3 toys for you to play with at home for the next month. I know you will have a blast with them, but while we were at the library, you wanted nothing to do with it. Your teeth were hurting, and you were tired from missing your morning nap. I think the whole building could hear your high-pitched screeeaaaaammming. Oh dear.

At 18 months old, you love: music (current favorite is Veggie Tales), your puppies, your teachers, your excersaucer, studying faces and mouths, anyone who wears glasses (you are OBSESSED with glasses), swinging, being held upside down, peek-a-boo, and your bed.

At 18 months old, you are not such a fan of: taking clothes on and off, eating, practicing sitting (and anything else therapy-related if you aren’t in the mood), skipping naps or bedtime, properly reading books (you’d rather chew on them than read them).

This coming month, we are planning on enjoying and soaking up springtime. We don’t have many doctors appointments this month, and you are healthy, so I plan on focusing just on you being you and letting you grow and just be 18 months old.

I love you Bubba Man. Happy 18 months!

Love,
Mommy

This is my 200th blog post. I’m writing it on the eve of my son’s half birthday. My 18 month son who I love and adore more than I could have ever dreamed possible, and who is so cute that my husband and I often marvel at how someone so precious is a biological combination of the two of us.

When I started blogging, I figured it would be a way to document my entrance into motherhood, to share pictures of my baby (and the dogs) with friends and family, and to record milestones, activities and other “fun” stuff. Basically, I was going to be a Mommyblogger (although I didn’t know that term, or its sometimes negative connotation, at the time).

Then Grayson was born. And he was beautiful, and complicated. And he hasn’t gotten any less beautiful, or complicated, in the last 18 months. And so as a result, my purpose in writing this blog has changed. It truly has been therapeutic to type my joy, my sorrow, my fear, and my frustrations in raising this very special little boy.

And I have gained so much by sharing our journey with you. I have made many friends through blogging and commenting on other blogs- friends who I would have zero chance of meeting in real life. I have been so blessed by those that follow our journey and their prayers, kind words and thoughts, and offers to help.

But I don’t want my blogging to be just about me, and my therapy. When I read other blogs, especially those by special needs moms, I am so encouraged and inspired. I don’t feel alone. I really want my blog to be an encouragement to other moms who may be facing similar struggles.

One simple idea that has been so encouraging to me is the fact that I can do this. Me. And you too, if you were faced with it. Regular women become special needs moms every day and none of them have super-powers. I’ve met a lot of these moms over the past few months, and I am in awe. In awe of their breadth of knowledge of their childrens’ condition, their patience, their ease in operating medical equipment, and their assertiveness in dealing with doctors. Sometimes I feel so inadequate, but then I have to remember how far I’ve come, and how far they’ve come too- they’ve just done it longer than I have. No one learns this stuff all at once; it’s a process.

I read today that 90% of parents who find out during pregnancy that their child has Down Syndrome abort the baby, one of the main reasons being they think they can’t handle it. I have to think that other genetic diseases probably have similar statistics.

We did not do any prenatal testing with Grayson, nor did we have any abnormal ultrasounds that would give us a clue anything was wrong. Had we known, we would most definitely not have aborted, but I can’t say I wouldn’t have thought I can’t handle this. I have days now where I think that. But I do handle it- some days not well, but God provides grace to cover me on those days.

So if you have to do it, you can. You can, you can, you can.

And there is the joy. Just read my blog. So much joy.

My sister Rebecca is in town, which means PICTURES! Of course, we love having her here for other reasons too, but this visit was timed perfectly since Grayson turns 18 months on Thursday (sniff sniff) and I wanted more professional pictures than from my iphone or the “auto” setting on my fancy camera.

Rebecca is SO talented- Grayson was not too excited about the shoot, but Rebecca still managed to get some awesome shots of the little dude (and some hilarious ones of his not-so-great ‘tude). He really wasn’t cooperating in our yard, so we took him to the park and plopped him in the swing- always a winner in his book. He could swing all day.

Also, check out the new blog header she made me this afternoon- I love it!

Can you tell it was really windy today? Ha!

If looks could kill…

He owns the swings

Well, my son made a liar out of me today. He passed his swallow study. Apparently, he can swallow, and when he’s forced to, he will. He had his swallow study this morning, and despite a lot of choking and gagging (but not as much drama as I had feared), both the liquid and pudding they gave him went down and he swallowed 4 or 5 times for the team of doctors, radiology techs, and med students that crowded the procedure room. The doctor told us it is in fact safe for him to work on eating and drinking, in therapy. This is great news for us, but tells us we really need to increase our feeding therapy!

I was so impressed with the hospital- everyone was especially nice to us (the weather? Spring Break? just really nice people?). We arrived really early because I had to go by the pulmonologist’s office to sign a medical records release form. Our appointment was at 10:00, but we checked in at 9:00. Ya’ll, we were DONE with the swallow study and walking out of the hospital at 9:45. Amazing.

Since we were already down in the Med Center and it was so early, we decided to hop on the Metro Rail and take a short ride down to the Rodeo. For those of you not from Texas, the Houston Livestock Show and Rodeo is here for 3 weeks every year, and all us Texans pretend we really are the stereotypical cowboys and cowgirls that people from other states think we are. We had already planned to go to the Rodeo tomorrow and dress G in cute Western duds, but it was totally worth it to go today instead, with the money we saved on gas and parking!

It was Grayson’s first Rodeo, and first ride on public transportation, and he celebrated by napping in his stroller for about an hour. But that was fine with us, as we strolled through aisle after aisle of vendors. Ryan really wanted me to get a rhinestone belt, but I just couldn’t commit. They were all either too expensive, too flashy or the buckle was too big. So instead I bought 2 bags of soup mix. Yes, I am totally lame, but one of my New Years resolutions was to eat more soup, and this was in fact, very delicious soup (I made the chicken enchilada variety tonight for dinner). Maybe next year I’ll be a lot hipper and buy a belt (although the soup place had some really good dip, too. Hmmm.)

So this is the part of this post where I had hoped to show you adorable pictures of Grayson petting his first goat or alpaca at the Livestock show petting zoo, but sadly the whole thing was overrun with daycare fieldtrips, with kids scurrying around like ants. Ryan looked at me like I was nuts for even considering an attempt at getting in the zoo, so we decided to give up on that idea and instead go outside for barbecue sandwiches. They did not disappoint. So here’s my only “Grayson’s First Rodeo” picture- pretty pathetic. Two observations about this picture though- he looks SO big to me and he looks like he is totally faking being asleep. But he really was asleep. Hmm.

So then we came home and Grayson crashed, I attempted to crash, and Ryan went to get my oil changed and find out about fixing my car radio, which works about 70% of the time. OH- and I have a question. Is it “common sense” not to get a carwash the same day as getting a brand new windshield? Because I did both yesterday. And when I told Ryan he said I should have known not to get a carwash because it was, in fact, “common sense”. I beg to differ, but maybe I’m just an idiot. But my car was really dirty.  So please, everyone pray that my windshield doesn’t come crashing in on me while I’m driving now.

Anyway, it was a really, really nice family day- much more pleasant than I was expecting. Tomorrow we are planning a trip to the mall to buy Grayson some new jammies and us a new set of sheets for our bed. Always and adventure around here!

This little monkey man…

See that mischievous smirk?

Those angelic blue eyes?

He knows what he did.

And he thinks it’s SO funny.

You know that saying “I just threw up a little in my mouth”? Well Grayson threw up a little. In MY mouth.

How was YOUR Monday?!?

*This post is written as a contribution to the PAIL blogroll monthly theme post. For my original breastfeeding story and thoughts on infant feeding, go here and here.

My kid is 17 months old. I haven’t breastfed or pumped for 16 months. For four weeks after he was born, I tried and tried to do something that would have never worked, although I didn’t know that at the time. The guilt was awful, the physical exhaustion and pain were intense. If I knew then what I know now, I would have given myself a freakin’ break.

My son is in the process of being diagnosed with Mitochondrial disease. Mito is a genetic disease that affects every cell in the body. The disease presents in a variety of ways and can cause problems in any organ system in the body. Many, many Mito patients have GI and eating issues. Grayson is no exception. When he was a tiny 5 pound newborn, asking him to breastfeed was probably more than his body could handle.

Grayson is now 100% G-tube fed. He survives on formula (Pediasure). Not breastmilk, not organic fruits or free-range chicken, and not anything I’m cooking him. I pop a can of Pediasure 3 times a day, pour it in a bag attached to a long tube, and it slowly drips directly into his stomach 22 hours a day. When I was a 35 week pregnant woman sitting in that breastfeeding class, I could never have imagined the way I would actually be feeding my baby a year and a half later.

Since Mito is a genetic disease, my husband and I will have to be tested to see if we will be able to have any more biological children (we won’t if there’s a significant chance we would have another child with Mito). I may never have another chance to be pregnant, give birth, or try breastfeeding. This makes me very sad, although I don’t dwell on it much since we are not emotionally, financially or logistically ready for another child right now.

If I do have the chance to breastfeed again, I will not put any pressure on myself. If I succeed, great. If it doesn’t work, I will gladly make those bottles of formula without an ounce of guilt. Breastfeeding is an incredible, amazing way to feed a baby. But so is bottle feeding, and tube feeding, when they help a baby grow, gain weight, and thrive.

Today was a good day. A yoga pants, t-shirt, ponytail kind of day. And especially a no doctors appointments kind of day.

Grayson’s three appointments this week were all really good. I got most of my questions answered and feel like we have  plans in place going forward. A quick summary:

Pulmonology: This was our first time seeing this specialist. I loved her. What I loved most was she seemed genuinely interested in Grayson’s story- the whole thing. She asked questions. She tied her recommendations in with other specialists and Mitochondrial disease.

Basically, Grayson is at risk for lung issues because of his low muscle tone. She suspects his lungs are healthy right now (we did a chest x-ray after the appointment to make sure) but we need to do everything we can to keep them healthy. She gave me several suggestions- some therapies to do on him daily, a prescription for Nasonex, and had me agree to get a Nose Frida and use it every day. Snot-sucking here I come! We also need to be very careful that food/liquids aren’t getting into his lungs, but that’s a GI issue

GI: Nothing drastic. Because G is still vomiting daily, he’s still on continuous tube feeds. The good news is he is gaining weight and height fantastically (20 lbs 11 oz, 31 inches). Dr. N did order another swallow study after I told him G isn’t eating or swallowing at all. He laughed when I asked how they do swallow studies on kids who don’t swallow. No, seriously- how do they? I didn’t get a totally clear answer- something about thick liquids and pudding. Hmmm…tried it. GOOD LUCK- ha!

Neurology: We talked about the headaches. The head-grabbing has gotten less frequent over the last few days, so we are not going to do anything right now. After he reviewed Grayson’s biopsy report, I asked Dr. R what he thought about G having Mito. He said, “It looks like that’s the direction we are going.” He then said he wanted to order the big, expensive genetic test- eek! I knew we would probably be doing it at some point, but I thought the geneticist would order it in a few months.

Since we learned about this test, which will hopefully let us know the gene or genes affecting Grayson and thus give us specific directions for treatment, therapies, and future family planning options, I’ve been really nervous about the cost (the geneticist told us it was about $25,000) and if insurance would cover it. This morning, I anxiously read the 17 test codes to the insurance agent to see what was covered. Guess what? It is! 100%!!!! I am thrilled of course, but also still nervous- I have a friend who’s having issues with her coverage for a similar test with a different lab, even after being told it was covered. But I did get a confirmation number and the person’s name that I talked to, so I am being optimistic.

I think I will take Grayson tomorrow to get the blood drawn. The test takes months and months to run and get results, so the sooner we get the blood drawn, the better. I just hope we don’t run into any logistical/insurance issues at the hospital or people who don’t understand what’s being run (this has happened several times before).

Hopefully after tomorrow we can have a break from medical stuff for a few days. Next week is Ryan’s spring break, and we are planning to have a fun, relaxing week!