Getting Ready

My love-hate relationship with insurance companies, drug companies, and the entire health care system grows. As I have mentioned in previous posts, Nathaniel received a diagnosis of growth hormone deficiency. It only took 3 weeks and more phone calls than I can count to get Nathaniel's growth hormone. Now the waiting is coming to an end. The starter kit from the drug company arrived last Monday. The actual medication arrived last Thursday (along with ice packs, needles, and alcohol swabs in a Styrofoam cooler). The nurse comes to our house tomorrow to teach us how to prime the pen and complete the daily injections. Nathaniel must sense something is changing as he asked to read his "special book" about the hospital (which we had before his sleep study). This is over and done with and we don't have to do another, so I don't see a reason for this book again. I did today create a social story for him to try to explain why he has to have shots everyday (and along the way explain why he sees so many different doctors for so many different things). I also added the steps for what we will be doing on a daily basis with his shots. He seems calm, cool, and collected about it all having read the story twice this evening. We'll see how it all goes tomorrow. I am of course nervous and haven't been sleeping well as a result of this anxiousness. Hopefully by the time I have my next break from work and school (officially starting August 13th unless I get my final paper done early) I will be able to get some rest and relaxation for a week. 

Nathaniel is the type of kid who needs to self-talk things for a while. I can only hope the social story with pictures of himself, his own things, and his brave Opa (who also has daily shots) will help in the process. He is already enjoying the foam microphone that came with information from the drug company and is talking very calming about "after the shot I'll get a band-aide". Praying for a smooth process.

Heading in the wagon to Highland Fest aka "the Festival".

"Look I am daddy" - So proud to wear daddy's watch.

Taking turns with mommy reading nursery rhymes in the book with his new microphone.

On a completely different type of "getting ready". I have been working extra hours after work and extra days while on break to help our program have things in place for our upcoming restructuring. We have had big changes every year since I started in St. Paul in 2008. This year however is much more widespread and we have 8 staff leaving the program and many more new staff than that starting in the program. One of my duties was to order and set up assessment materials, sign-out systems, and organization of materials in order to best meet program needs and to start with a clean slate in some ways. This sounds easier than it was. In order to do all of this organization I had several large cabinets to clear out of junk, 2 rooms full of junk to clean out and organize, and the newly cleaned shelves to rearrange and this was only at one site. I also had a second site to organize and distribute/label materials. I spent 2 1/2 hours on the below pictures - pretty quick progress I must say. I still have a few hours of work on this site tomorrow morning. The other site took 2-3 hours of work on Friday last week. Thankfully it will all be organized and in place by August 1, the deadline. Oh did I mention I spent a Saturday afternoon organizing, labeling, and preparing 3 new assessment kits (that was the fun part at least). In all honesty, it was a good feeling to get it all done. I just keep telling myself that with 35-40 staff members it won't stay like this for long and that I can't let it bother me when it all goes downhill.

Ignore the boxes - newly organized shelves and equipment in the previous junk room #1

This room was floor to ceiling and wall to wall equipment. You couldn't walk in it. Now it is a meeting room (chairs to be added).

These shelves were full of books, craft items, toys, and many broken/missing toys and pieces. Needless to say I had 4 boxes to donate and 2 boxes of trash.

So Different to Be on the Other Side3

We are in the midst of medical appointment after medical appointment and procedure after procedure and the waiting game for results, prior authorization from insurance, and "next steps". I have been through this as a therapist with so many families. I have been on the medical end calling doctors and other providers. I have been the "go between" trying to help families understand all of what is going on, being that support system. Now I find myself in need of that support system as a parent of a newly diagnosed child.

I think Anthony and I spent this last week in relief. Relief that our prayers were finally answered and that after all the searching there are clear reasons for his slow growth and possibly for some of the behaviors we see in him. It is a week later and reality is starting to set in. Maybe for me this is partly due to the fact that we had Nathaniel's 3 year old check-up and pre-op appointment today and for about the 3rd month in a row of bi-weekly weight checks we are "holding steady" at 25 lbs, 8 ozs and 35 inches. It is so discouraging that we're just continuing in our holding pattern. We know that we have a path. We know that things will happen. That there is a lot of change ahead in our lives. We just have no idea when it will start. We have no idea how much this will impact our lives for years to come. We are still facing uncertainty. In some ways I still feel like that "go between" for the rest of my family. I am relaying and helping to explain information to my husband, parents, in-laws, grandparents, extended family, and close family friends. While they are all supportive of me as a mother, when do I just get to be his mom, to be the one to worry and carry on for him as best as I can. When do I relinquish the "go between" role. Probably never, but a mom can hope.

I have always had empathy for all of those families with whom I work. Now more than ever I understand a minuscule amount of what they are going through. We got a patient authorization form today from the company that will be supplying Nathaniel's growth hormone. I can only hope it is the next step in getting us closer to the actual start of treatment. We are still waiting on authorization from the insurance company and I am told that even with his diagnosis and test results we don't have a 100% guarantee of coverage. That bums  me out so much. I don't even know where I will turn next if we are going to have to foot this bill out of pocket for the next 15-18 years. I will do whatever that needs to be done for my little man, but this is one of those hard decisions that needs to be made. I have no idea how this may affect us for years to come. Another piece of that agonizing uncertainty.

After Nathaniel's 3 year old check-up today and my knowledge of his sensory processing difficulties, I now know his doctor is on board with writing orders for service to address this. However, as an OT, I know the difficulties with having a diagnosis such as sensory processing disorder covered by insurance. This is another big decision I have to make. I have to decide how I want to approach services for him. Where I might want him to receive services. Whether or not I want to approach it from the feeding end of things (as an ADL - activity of daily living) or if we can try to create a stretch to have the services addressed related to his difficulties with change, transitions, and his rigid behaviors (which in some ways are also activities of daily living). Both are equally challenging parts of the day. Both may change as he ages and also as we start hormone replacement therapy. His appetite should increase and might improve feeding patterns. His blood glucose levels should be more stabilized and he should have fewer highs and lows which may alleviate some of our concerns. Do I wait until we start his hormone replacement therapy? Do I wait until we have the results of his sleep study (and potentially treatment/surgery for that)? Do I wait until we have the results of his MRI? Or do I shove ahead now? So many decisions that I am sure we will make soon. In many ways I would like to just see how our current course pans out since we have several appointments scheduled within the next 2 weeks and more to be scheduled based on results of some of the procedures ahead.

My Baby is 3!!!

On Tuesday, Nathaniel turned 3! It was so fun to see him put 2 and 2 together and realize what having a birthday means. He was happy to be the center of attention and to get a bunch of presents "all for me!" He is also ready to become 4 now. I am hoping that this year will be a little easier than the last, but only time will tell. Some wonderful things about my 3 year old:

He is a learner and soaks up information that I didn't even know he was tuning into.

He started using first person pronouns correctly within the past week & is super cute being proud of his "I" and "me" statements.

He LOVES cars, trucks, trains, and anything that moves. He has a fleet of matchbox vehicles (probably well over 100 by now between his "4" houses) and knows the name of pretty much all of them.

He recognizes streets that we drive on frequently. He recognizes many community locations. He tells us which way to turn and will let us know if we are going the wrong way.

He truly loves his baby brother, but still isn't quite sure how to best interact with him.

He likes to sing - favorite songs are "50 states", "James K Polk", among others.

His favorite mealtime prayer is "Johnny Appleseed".

His bedtime songs are "Twinkle Twinkle", "I see the moon, the moon sees me", and "Up-o, Up-o".

He "reads" us stories at bedtime more often than we read them to him these days.

He loves sleeping in his big twin bed (which was his great-great-grandmother's when she was a child).

He has taken ownership of his statement that he has carried for months "When I am 3 I will wear underwear all the time" and "3 year olds don't wear diapers". We've had a week basically accident free. He is staying dry 90% of the time over night and for naps and is starting to more consistently let us know when he needs to go. He also easily uses adult restrooms at public places. I think again, he partly knows that being 3 and wearing underwear are part of being big enough to go to the school across the street from Grandma & Papa Betts's house (which means that sometimes he gets to ride in Opa & Oma's car).

Finally, his favorite movies/shows are Toy Story 3 (and 2 and 1), Cars 1 & 2, Bob the Builder, Sid the Science Kid, and Super Why.

Here are a few pictures from his birthday:

A Path to Travel

On July 5, 2012 we got the news we have been waiting 2 1/2 years to hear. There is a reason for Nathaniel's slow growth and probably many of the other things we have been concerned about the past few months.

On July 5, 2012 we got the news we have been waiting 2 1/2 years to hear. There is a reason for Nathaniel's slow growth and probably many of the other things we have been concerned about the past few months. At 6 months of age, Nathaniel started to fall off the growth charts for his weight and by age 8 months he had completely fallen off. It took us until about Thanksgiving of last year (about 1 1/2 years later) to get him back to the 5th percentile for his weight, however by March of this year his height dropped off to the 5th percentile too.

In the past 2 1/2 years Nathaniel has had multiple blood and urine tests, a couple of bone age scans, an endoscopy, a G-tube trial, a growth hormone stimulation test, and many many specialist appointments. Nathaniel's growth hormone test came back indicating that he is deficient in growth hormone and will need to start hormone replacement therapy once we have prior authorization from the insurance company. He also gets very hypoglycemic when he goes more than a couple hours between eating (which happens on most days). After talking with Nathaniel's endocrinologist about the results, I am beginning to think some of his behaviors may be related to being hypoglycemic. Hopefully with the start of hormone replacement therapy, some of our issues with Nathaniel's challenging behaviors will get better. We are also hoping that it will stimulate his appetite a bit making mealtime less of a struggle.

We still have a long road ahead. Nathaniel has a sleep study coming up next week. He will see his gastroenterologist next week also. He has an MRI the following week to check his pituitary gland. At some point soon we will schedule his hormone treatment and we will have an appointment to get trained on that. Once treatment is started we will have very regular blood checks to test his hormone levels. But the good news is that we finally have an answer and we have a direction to follow.

I am glad we really pushed through with all the tests, appointments, etc and stuck with our gut. Over the years my gut was telling me that there was more to this than the unsolved mystery. Then when Andrew was born and ate similar amounts of breastmilk each day as Nathaniel did at those same ages and was maintaining at the 50th percentile. Andrew's 6 month check-up was the clincher. Andrew eats 5-6 ounce bottles during the day, just like Nathaniel did at that age. The big difference is that Andrew sleeps through the night, whereas Nathaniel still woke 2x/night to eat at that age. Knowing what I know now, he was probably getting hypoglycemic and it is no wonder he didn't sleep through the night until 11 months and then had a period of time from age 14-18 months where he didn't sleep through the night most nights either. He continues to have sleep issues and I wonder how often he is just very low in terms of his blood sugar levels. My gut was telling me to keep looking for an answer. So thankful that we have finally gotten one.

Here are some pictures of Nathaniel at 7 months and Andrew at 6 months. I think can really see the difference in their size & definitely tell they are brothers.

Long Overdue

I really need to get back into the habit of blogging more, but sadly this has moved to the bottom of my ever-growing "to do" list.

Let's start with being a wife ... well Anthony is working late and weekends and all the time and I'm busy with the boys, the house, work, and school. We snippets of each other. We have quick conversations over the phone about goings on. I stay up many nights waiting for him to get home and plugging away at homework to pass the time so that we can have a few minutes of adult conversation. Today we actually had a family day and it was awesome to just spend time around each other.

Now onto being a mom ... that part is certainly keeping me busy. Nathaniel is approaching 3 years old. The big day is on Tuesday! He tries my patience and those of his grandparents, great-grandparents, aunties, and others on a daily basis. He is just too smart for his own good sometimes. We love him though and he is ever filled with comments that make us laugh and forget all the "no no things" he does each day. Andrew will be 7 months on Thursday. He is my happy guy. He gets fits of giggles often and adores his big brother. He sits pretty well now on his own, though we still spot him in case a topple occurs. He scoots backwards everywhere and gets up onto hands and knees sometimes, but hasn't quite figured out the forward yet which really bothers him. He primarily uses rolling to get to everything in sight.

As for being an OT ... well work is in the midst of a complete restructuring. I am on the committee helping to put processes in place for the transition which is not always the best place to be, but hopefully will lead to some good outcomes. I just finished a week off of work and should have 2 more weeks off, but I am picking  up several extra days to help with the transition. I must be nuts considering the 5 medical appointments we have for Nathaniel in the next 2 1/2 weeks, but more on all of that in another posting. School is insane. I am barely keeping up with the work, but I am really enjoying the topic and the learning and hoping that this course will encourage and inspire me to be a better leader in my work environment.

A couple pictures of my little guys ...

Bob the Builder can we fix it? Bob the Builder Yes we can!

Little man gabbing away at mommy