Thanksgiving 2012

Ok so I got behind on posting to my blog. Halloween came and went. Nathaniel enjoyed it, but didn't eat a bit of his candy. Our 6th anniversary came and went. We got to go on a dinner date on our anniversary and also go to dinner and a concert a couple weeks later and have a night's sleep without screaming infants or toddlers thanks to my in-laws for keeping them overnight. Then all of a sudden it was Thanksgiving.

We had our usual 2 Thanksgivings day. First stop was Oma and Opa's (pictures to follow of the 3 boys and their typical selves), then off to the de Sam Lazaro's for Thanksgiving with Grandpa and Grandma D, Great-Grandma Virgie and Great-Grandpa Chuck, Auntie Shanti and her "friend" Ben, and the Rutherford gang. We were lucky to get to see and spend time with Auntie Shireen and her "friend" David the weekend before Thanksgiving. (I put "friend" as such as that's what Nathaniel calls them).

Nathaniel enjoyed the Turkey and Vegetables. Andrew loved the Turkey, but was only so-so on the rest of the actual Thanksgiving fixings. Anthony and I of course gorged ourselves out, especially since the menu at each Thanksgiving is so different from one another.

I hope to do more blogging once finals are done at the end of this week. Just a little taste of our Thanksgiving to start.

The three in their true form

Even more fun!

Andrew decided to get out of there before he got squashed

Happy Thanksgiving - First Family Photo of 2012

Halloween 2012

10:30 pm and Halloween chaos is still in my head. I don't remember it being this much work when I was a kid. Nathaniel has been having a significant amount of buyers remorse around things lately. He got the $1 plastic pumpkin at Target a couple weeks ago for trick-or-treating and chose the orange one to come home and decide he wanted a different color. He chose to be a fireman for Halloween (a bunch of costume pieces we already had around the house), then changed to want to be Bob the Builder (again a bunch of costume pieces we already had around). He ended up being a fireman briefly and then "Bob" for the rest of the night. We made it to about 8 houses and that was all he needed. 2 on my grandparents' block (well my grandparents' house and my aunt's house). 4 or 5 on my in-laws block and 2 on our block. Just enough for an excited and worn out 3 year old.

Andrew had a horrible night last night and he and Anthony ended up sleeping in the chair for several hours. This morning we put him in the one piece "little devil" costume as it was fitting for his attitude. He later transformed into "Luigi" alongside cousin "Mario". They were so stinking cute, but heaven forbid they both sit still for 30 seconds. Andrew was distracted enough by lots of excitement tonight with Halloween dressing up, pictures, and watching Grandpa D on Skype that he stood on his own without support several times for over a minute. He is going to be walking very soon and then we are really in trouble since he is already climbing everywhere.

Halloween has left me exhausted. Pictures below of my angels (who are now fast asleep). Nathaniel's spider costume is complete for his "Creation Day" party at preschool tomorrow. Hopefully he decides to wear it after all the work I put into it tonight. I will post more pictures in whatever he decides to wear tomorrow for creation day (spider or lady bug). Also I have a video of Nathaniel singing the Bob the Builder song that I'll try to upload soon. Happy Halloween and November soon.

Riding a Tricycle & Feeling So Proud

Nathaniel finally surpassed the 3 feet mark in October. At his endocrinologist appointment on Oct 5, 2012 he had finally reached 36.5 inches! It has been a long time coming. He has finally outgrown his 24 months and 2T pants in length, though some of the 3Ts are still a bit loose on the waist for him. His growth is going so well on the growth hormone that his daily dose has already increased to try to keep up with his pace. This is a really good thing!

Here is one of his proud moments recently ... He is now tall enough to reach the pedals on his tricycle and is so proud to be able to ride it on his own. (Side notes - this tricycle was a gift for my oldest cousin, Kevin, from our Betts grandparents over 35 years ago. My 3 Betts cousins, my 2 sisters and I, and our youngest cousin on the Betts side all rode this tricycle. Now Nathaniel is enjoying it as well. He learned to ride it on the 6th anniversary of my Grandma Betts's passing. A great day and way to remember her!)

OTD

I am in my third semester of my OTD (Occupational Therapy Doctorate) program and it is starting to get real. Each semester has been so time pertinent to the changes that were occurring within my work program. It has worked well considering that the program is a clinical doctorate program so all my practical work is done within my workplace environment on workplace topics and events.

These past few weeks I have been starting to delve into the realm of IRB (institutional review board) procedures and my long term doctoral project. It was a whirlwind of a week, but now I am finally coming back down to earth, my pulse and stress level are back to normal, and I am starting to feel like I can very soon become a real researcher. In many ways I still feel like I need a bit of "hand-holding" in all of this, but then I read an re-read and re-read processes and realize that I can do this. Never did I consider that I would ever move into the realm of actual research and being one of those "names" known in the MN OT realm. However, it is getting real. I am in the process of establishing a pilot project at work. An undertaking I would not have thought to attempt in years past, but confidence in doing curriculum writing at work the past 2 years and 2 1/2 OTD course under my belt have turned me into a different person. Hopefully this isn't the beginning to a career of insanity doing and writing up research, but maybe that can just be a full time gig and I can forget about all the paperwork in my current role ;).

Anyway, it amazes me that a year ago I was just starting to think about the potential to apply to this program. I was nearing the end of my pregnancy, crazy busy at work, and delving into potentially starting a doctoral program with a newborn in tow. How things have changed in a year! I'm actually doing it and with flying colors thus far. A year from now I will be preparing to submit my doctoral proposal for acceptance and 2 years from now if all goes well, you can all start calling me doctor ;).

As we finally got one thing answered another question arises

In his house (Papa's shed).

Nathaniel is making good progress with his growth hormone treatments. He gained 1.5 lbs and grew 3/4" in 6 weeks since starting growth hormone. This is a huge feat. We are happy he is finally growing, starting to have a bigger appetite, is asking for food, is feeding himself more of his meal, and on a side note is LOVING preschool.

Andrew is our new concern. He dropped from the 40th percentile to the 20th percentile on his weight curve at his 9 month check-up. He had blood drawn and there are some red flags. Several of his lab values were either high or low and similar to those that were discrepant for Nathaniel. So our next step ... endocrinologist for that little man as well. It is nerve-racking. I wonder if it is the same thing, something all-together different, or nothing. We struggle with mealtime so much with Nathaniel and it is hard to think we might have to the same problems with Andrew. It makes me worry there is something with our genetics and whether or not our thoughts that we might have a third child after I finish my doctorate will change if they both have some sort of growth problem. Due to the limited number of pediatric endocrinologists, we are waiting until November to get in to see the endocrinologist for Andrew. It will be 3 trips to Amplatz for sure for the 2 boys in the next 2 months. Time will tell. It doesn't get easier the second time around with the worry, but at least we are pros at all the tests and procedures by now. So I promised some pictures. Here they are, busy as ever, and loving life!

Wearing Auntie Nicole's Shoes

Dancing Schneewalzer with Grandma

Helping Papa get the holes ready to fill with cement 

 

Wake up big brother

Playing together

Playing "church music"

Stethoscope & US puzzle - best combo

Enjoying the Tractor more than the restaurant

Making himself handsome

First day of school

Bob the Builder Pirate

Sleeping with Papa Bear at Grandma & Grandpa D's

                       

Enjoying the Park

Standing on his own (9 mo and 3 days)

6 weeks of shots and 9 months with 2 children

It has been an adjustment again these past 6 weeks as we try to find a new rhythm and routine for our evenings with Nathaniel's bedtime shots. It took us about 8 days of fighting before he got used to them, but now 98% of the time he sits and waits patiently and tolerates my administration of his shot. He prefers to have them in his "bum", probably because there is more fat there, but tolerates "leg days" as he calls them. The good news ... It's working. From age 2 to age 3 we spent the year hovering up and down in a 3 pound increase and waded around at 25.5 lbs. He has now received 6 weeks of daily injections and has gained 1.5 pounds and grown 3/4". To put this in perspective. He spent 6 months trying to gain 1.5 lbs last year and only grew a total of 3/4" from age 2 to age 3. This is HUGE for us.

We also finally got news this week about his MRI results. No big surprise that his brain is completely normal and there are no lesions present. Good, good, good is all I can say about that. We did discover that his pituitary gland is small. So what does that mean, exactly? Well it is most likely the reason behind his growth hormone levels being low - the pituitary is small and not producing enough growth hormone. The pituitary also produces other hormones - thyroid, cortisol, and others. So far Nathaniel's labs show that all his other hormone levels are in the normal range, so we don't have to worry too much, but we do have to keep an eye on those other levels. If those start to drop too, he will have to start treatment for those as well. I keep praying that this is all that it is and we just keep moving along in the right direction, but this new information brings that worry back to the fore-front. So hard to be a parent and so hard to be the parent of a child with extra needs.

While Nathaniel is finally starting to move in the right direction, we now have experience with all of this and have to start being cautious with Andrew. He went in for his 9 month check-up and dropped from about the 40th percentile for weight to the 20th percentile. This is well within norms and is even normal at his age due to increased mobility and activity level at this age. However, we have a family history, so we have to look at things more closely. He had a bunch of blood drawn yesterday and we are awaiting the results before we make any decisions of what might need to be done next. He is much more sensitive to foods than Nathaniel was at that age. He has reflux and still needs his medication (we now have Nathaniel on a reflux medication which seems to be making a lot of difference for him too). He has eczema just like his daddy and we don't know yet if it is exacerbated by foods. I pumped and froze a lot of breastmilk early on in order to give him that extra mommy milk for as long as possible. We have been suggested to try gluten free (which we tried with Nathaniel for a bit) and dairy free. Not sure we will start that quite yet, but if his weight curve continues to drop and we don't have another reason, we'll probably head down that road.

It's back to school for me and lots of changes at work, but that is a topic for another day. It is also back to school - and a new preschool - for Nathaniel and I promise some pictures and "Nathanielisms" from his beginning of his school career soon.

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.