MAGIC Convention 2011 Part 1 (LONG!)

Since I have no car at the current moment (in the shop...again) and no stroller (in said car trunk...in the shop) and its rainy outside I thought I would be ambitious and post 2 days in a row! So much was learned and happened at the MAGIC Convention that I thought it deserved its own post. The convention was in Lombard, IL which is just outside Chicago and it was really nice (aside from some billing issues we have had after the fact the hotel was really nice).

This was our first year attending the convention and I had somewhat mixed feelings about it. When we originally decided to go (back in like January) I was really excited to learn more and get to know other RSS families and meet some of the women I've been "talking" with online in real life. There is a private facebook RSS support page that I go to sometimes and there are some familiar faces who have given me advice and encouragement since Nicholas recieved his diagnosis. But as time went on my excitement turned to feeling nervous/not wanting to go as much. I had heard from a few other families who had gone in the past that it was helpful but not as helpful as you would think, that it was clique-y with the other RSS families and that there was a lot of negativity. I am not in a place where I want negativity and I had no desire to spend a bunch of money to go listen to everyone complain and have "woe is me" attitudes.

The nervousness came from a pre-scheduled consultation that I signed Nicholas up for. There is a nation-wide known endocrinologist that works with RSS kids and has been a leader in research and treatment of RSS kids for the past 25 years. Basically she is the best of the best and is the dr. you want to see if your kid has RSS. She treats out of Mt.Sinai in New York and many, MANY families have her as their child's treating endocrinologist and fly from all over the country multiple times a year to have their child be seen by her. She was going to be presenting at the conference and giving free consultations. I signed up, which was a no brainer, but then got worried that after seeing Nicholas we would find out that we had dropped the ball on his treatment or find out that he needed a g-tube or something and it would leave me feeling terrible and sad for an entire weekend. Again, not something I wanted to do, plus this dr. (Dr.H) is not exactly known for her bedside manner but she is the best when it comes to RSS so we had our consultation on the books.

Thurs. night we checked into the hotel and had a free consultation with a pediatric dentist since a lot of kids have some mouth issues/palate issues and over crowding and jaw issues that require braces and all sorts of other things. I just wanted him to look at Nick's teeth and tell us if we should be doing anything other than brushing at this point. Nick's teeth are great and coming in nicely and we should start seeing a dentist at age 2 and we should make sure to pick a dentist who has a speciality in pediatrics. Easy enough-- during this time on Thurs. they had a big room filled with stuff for kids. It was a bunch of pharmacuetical companies and medical company reps with booths with free toys and stuff for kids. Nicholas got some free ice cream, ran around like a crazy person, got some free toys and pens and notebooks and bags, etc. It would have been really fun for a kid probably 4+ (there was a rock climbing wall and face painting and balloon animals and a funny picture booth kind of thing and WII games to play) but for a 16 month old there wasnt much that kept his attention for longer than a minute or two. It was fine though since we had driven for 5.5 hours and then checked in and went to this game room place and just had an early night.

Friday was the busiest day by far-- there were speakers for Donnie and I from 8:30am to like 5pm (with some breaks for lunch and stuff). We had paid for Nicholas to have childcare provided so he was dropped off at the daycare so Donnie and I could focus on the speakers. During each time slot there were 2 different options of presentations so Donnie and I split up so we could get the most info. Donnie went to a presentation about nutrition and how to get calories in your kids without needing medication. Donnie said it was great and really informational so I went ahead and bought the speakers book so I could read it (havent gotten to it yet). I went to a long presentation by Dr.H about the basics of RSS treatment and common problems and her treatment protocols. This was great information and made me more confident that we were already ahead of the game and on track with his treatment and dr's (main dr's at this point are his endocrinologist, gastroenterologist, nutritionist, ortho and pediatrician). We then broke for lunch and Donnie stayed with Nicholas so he could nap while I attended the 2nd half of the presentations.

The afternoon had GREAT presentations! The first was on Limb-Lengthening surgery-- which I know, I know, it sounds terrible and painful and just awful. I don't know about you but when I picture this surgery I think of breaking bones and months upon months in casts and bedridden and all horrible things I wouldn't want to put my child through. In actuality it is NOT that way at all! After talking with the ortho dr who did the presentation we found out that Nicholas has a predicted discrepancy of 3-4cm which is quite a bit and definitely would need something to be done for long term treatment.

We had already seen 2 different ortho dr's in Cincy, the first told us about a procedure called epiphysiodesis which essentially stops growth on the longer leg so the shorter leg can catch up. This freaked me out for a variety of reasons, 1. we are working REALLY hard to get Nicholas to grow and I am really against doing anything that will be STOPPING growth and messing with the growth plates, 2. Why would we do a procedure on the "normal" leg and leave the other leg untreated when in RSS kids the discrepancy is caused by an undergrowth in the shorter leg not an overgrowth in the longer leg. Basically it would be treating the leg with no problems and leaving the leg with the issue alone...seems kind of backward, 3. the possible risks are serious-- permanent damage to the growth plate which could stop growth all together. The ortho who suggested this also didn't do any official measurements of Nicholas and just "eye balled" the discrepancy. He also wanted to do this procedure at age 5 (again, really random...had no explanation as to why age 5 would be the age to do). Basically I ran the other way and got a second opinion. We were really lucky to get an appt down at Shriner's in Lexington where we got much better results. The dr's had official x-rays done of his bones to REALLY see the discrepancy. She agreed that the epiphysiodesis wasnt suggested but she thought his discrepancy would probably stay the same (its currently 1.5cm) and not get larger as he grew. Therefore she just wanted to wait and see and in a year reevaluate if we should get lifts or what we should do.

The speaker at the conference talked about how in his experience with RSS kids (which is alot since most RSS kids have a discrepancy and he is who Dr.H refers all her patients to) the discrepancy continues to grow and once the discrepancy is past 2cm, using lifts for long term treatment isnt the best route to go. He said with lifts its too easy to be non-compliant and not wear them and before you know it you end up with chronic back and knee pain. He suggests limb-lengthening surgery where they basically go in and cut the bone and put a frame around it. Every day you turn the frame so that it separates the bone a tiny tiny tiny bit and as the bone heals new bone regenerates to fill in the gap. He said that it is usually 10 days of being in the frame for each cm that you are lengthening. So for Nicholas who will end up with say a 4cm discrepancy he would be in the frame for 40 days. But during those 40 days he can still be mobile and active. After that there is about another 3 months of physical therapy to make sure the muscles stretch with the new length and to just work on strengthening. He said the kids never undergo general anesthesia and that an epidural is given and afterward usually tylenol is enough for pain management in kids. The pain is essentially equivalent to a child who gets growing pains during a growth spurt which is typical in all kids. His website explains it WAY better than I just did but it really put my mind at ease. This procedure wouldn't need to be done for a while (he recommends jr.high age as an ideal time to do it) but I feel confident and ready to discuss the decision with the dr. at Shriner's when we see her next year.

This post is getting long so I am going to write some more in a part 2 section....if you stuck with me this long then....you are probably family since this is probably boring to most people BUT stay tuned for info about the teen round table and our consultation with Dr.H!

Summer 2011

Well since I haven't blogged since April I guess I can do an entire recap of the summer of 2011 since it is winding down to an end. Things have been so busy and fun around here! I am purposely keeping myself (and Nicholas) really busy since I somehow seem to have energy-- its almost like if I have 1 day go by that I don't plan on doing something I am afraid my body will realize how crazy busy I've been and refuse to get going again. Needless to say this post will be long as always and I promise to be brief and possibly go into more detail in later posts (I always say this and rarely do so don't get your hopes up).

May- Nicholas started growth hormone therapy at the very end of April so May was our 1st month giving the nightly shots. He takes them like such a champ! Now that we are a few months in I can say that they are really no big deal and I can actually give him his shot without either of us crying anymore :-) We didn't do too much in May because it was rounding up the end of my 1st trimester which meant I still had pukey days quite regularly but by the end of May my morning sickness was completely gone so that was pretty awesome! (Since starting the growth hormone Nicholas grew 3 inches between Feb and June!!!)

June- We took a family vacation with my side of the family (my parents, my sister and her husband and 3 boys, my brother and his girlfriend and my little sister). We used to go to South Carolina every year as kids and we had gone in years past but the last time we went was 2007 (right before Donnie and I got engaged) This year we were all able to get our schedules aligned and my dad rented this AMAZING house for us to stay at! We were super excited since this was Nicholas' first "vacation" meaning first time on an airplane, first time on the beach, etc. He seriously loved it! He would walk up and down the beach without paying any attention to make sure someone was following him. He would walk up to girls laying out on their towels and just say "Hi" all casually haha It was adorable and he had a blast with his cousins and aunts/uncles. It was really fun to get together with my side of family since my brother and sister both live out of state.

July- We took 2 trips this month-- the first was to the MAGIC Foundation Annual Convention. I know I've talked about MAGIC before and I have another link to them in my sidebar (Is your child growing normally?) MAGIC stands for Major Aspects of Growth In Children-- they are a wonderful network of information and support for families of children with growth disorders. At the convention this year there were 112 Russell Silver Syndrome Families!! It was nuts to see so many kids that "looked" like Nicholas and even more nuts to be able to go an entire weekend out in public without once being told "Oh my word! He is so small! How old is he?" or "Wow! What a little peanut--was he a preemie?" It was refreshing to be around other people who just "get it". I learned so many great things at convention that this definitely deserves a post in and of itself. The cliff notes version is that Nicholas is growing perfectly (praise God!) and the RSS specialist we saw literally had no other suggestions of things we should be doing or doing differently! We also found out that Nicholas will need a limb-lengthening surgery sometime during his pre-teen/teen years which was unexpected (his right leg is shorter than his left). Lastly, kids with RSS are simply that-- KIDS with RSS. Talking to some older teens/young adults w/ RSS really calmed my fears about what life would be like for Nicholas as he gets older, starts school, etc.

The week after we got back from Chicago (where the convention was held) Nicholas and I decided to travel up to Cleveland to spend some time with my Grandma Rosie (mom's mom). She is the best :-) I have always been really close with her and a really cherish the one on one time we get especially since becoming a mother and a wife, its wonderful to talk with her about daily life and just get her wisdom and advice. I've also become MUCH more confident about traveling with Nicholas by myself. He really is my little buddy :-) He is my day to day sidekick who keeps me company and makes me laugh, a lot! We got to see my cousin Maddie who came over for a slumber party (she is about 8 or 9 years old) Nicholas had a BLAST playing with her and doing crafts and watching old videos of Sharon Lois and Bram's Elephant Show which was one of my favorites as a kid. Its weird to watch those videos with my own kid and to look at the kids in the show and think that they are all probably in their mid to late 30's with families of their own.

Aug- Unfortunately we had a vacation planned for Aug also to go down to Lake Barkley with Donnie's entire family but we had to decide to skip it due to needing more vacation time when the baby comes, which we found in July-- is a little girl! Its finally sunk in that I am having a girl (buying adorable pink outfits has definitely helped!) So for this month I am just planning loads of playdates, enjoying as much time as I can with my parents and sister before my mom and sister go back to work/school in the fall and trying not to melt in the weather which is REALLY not accomodating for pregnant women, or kids, or the elderly or really anyone. Hopefully I can be less lazy and do some other longer updates about the convention, what I learned during my 30 day fast from tv and internet and other fun summer things but if not-- keep your eyes peeled for another update come fall/winter. Hopefully I will update before baby girl gets here!

*insert creative title here*

I am such a bum! I have only done 2 blog updates in 2011 and its almost the end of APRIL! That is ridiculous! I wrote a few and will post them probably once a day until I get caught up. Keep in mind that these will be boring posts but honestly I do this blog for memories sake because its nice to be able to look back and remember exactly what was going on.

So lets time warp back to March 2011….

Nicholas is 1! I cannot believe that my tiny baby, my 3lb 6oz miracle of all miracles baby is one year old. My heart hurts to think that his first year of life has passed by so quickly. Is it a normal mom thing to feel sad and think that you missed out? Maybe missed out isn’t the right word but when I think back to his 1^st year of life I wonder if I paid enough attention. Did I memorize his little face? Will I be able to remember how sweet he smelled as a little infant? Did I spend enough time rocking him and singing to him and cuddling with him? Did I let him nap too much? Haha I know that seems silly but I want to enjoy every second with him and I don’t want to let these seemingly unimportant moments pass me by because I know that as he gets older I will MISS these seemingly unimportant moments. The moments at 2am when its just you and the baby, rocking in the nursery, half asleep as he snuggles up closer. Okay I really need to cool it with the nostalgia.

So apparently I missed the memo about turning 1= toddlerhood and this may not be true for everyone but I think Nicholas decided that he had had enough of this baby-thing and wanted to move full steam ahead into “I am crazy, get into everything, I will give you mischievous smiles as I act ornery” stage. Let me tell you—I fear for the day that he can finally walk because I know that it will officially mean that he has beaten me. I just CANNOT keep up with him! He is so fast, gets into the most ridiculous things, climbs on everything and is such a little boy! He enjoys banging his head into things, taking rough falls, wrestling with daddy and getting into mischief (i.e. finding a roll of toilet paper somehow and unrolling it completely, or scaling the baby gate until he is standing completely upright but unable to get down). Anyone who says that toddlerhood doesn’t start till age 2 is nuts! Well, either they are nuts or I am in for an even BIGGER surprise…can he really get more crazy?! Please seasoned moms, just don’t tell me about it. Laugh and point when you see me chasing after my little hooligan haha

We had a birthday party for Nicholas a little early because he was scheduled to have surgery a few days before his actual birthday but it ended up being cancelled! Yay! His party was fabulous, dinosaur themed and I think he really had fun. He loves playing with the “big kids” and feeling like he is part of the gang and I think he had a blast and LOVED all his fun presents! We did a chili bar (white chicken chili, texas style chili, beefy black bean and corn chili and veggie chili) with all the different toppings (spaghetti, sour cream, jalapenos, cheese, hot sauces, onions, crackers, green onions, etc.) He had an AWESOME cake too—some friends of ours have a side business doing cakes and they made him a HUGE dinosaur cake (it was 2- 11x13 cakes (one chocolate, one vanilla) side by side with an even BIGGER rice crispie shaped dinosaur covered in fondant. Then they made this cool dinosaur egg nest out of rice crispie and chocolate and it had a little cake egg in it for Nicholas to enjoy as his “smash cake” and smash he did! He was all about it and really liked his special cake!

Basically that is all that happened this March, at least as far as I can remember, your first-born turning 1 is kind of a big deal and it overshadows any other things that went on in March—so there ya go! YAY March 2011!

Season of Sickness

This winter has truly been the Season of Sickness here at the Glenn house. I would always hear about other families who had what seemed like an entire month of illness but until I had a child it had never been me. It’s been seriously ridiculous. So far, since Christmas we’ve had:

Nicholas: 3 ear infections, 17 days worth of the stomach flu, 14 days worth of a NASTY cold, 2 ER visits, 2 days of hospital stays and 1 surgery

Lauren: 4 days worth of strep throat, 3 days worth of stomach flu, 5 days worth of colds

Donnie: 3 days worth of stomach flu, 7 days worth of cold/flu

Apparently our house is one big cesspool of germs. But on the bright side I feel like I can now say I’ve handled it—that we came out unscathed and that I never want to be puked on again (at least not until next winter please!) If only we had had the foresight to buy stock in Lysol….

The really unfortunate part of all this sickness is how rough it’s been on Nicholas. For an RSS kiddo, illness is a BIG deal. While Nicholas didn’t lose a ton of weight (only a few ounces) it’s a BIG deal for him. At his 9 month well visit Nicholas was 12lbs even, now at almost 12 months Nicholas is still only 12.1lbs….not so good for 3 months of growth. While yes he had the stomach flu, the times he wasn’t pukey he was being fed HIGH calorie food (I’m talking toast with butter on BOTH sides per our nutritionist, entire bowls of ice cream in the evening…any and everything we could do to get as many calories in him as possible!) Unfortunately they think his lack of weight gain is also attributed to his growth curve slowing down and perhaps plateauing which is common for RSS kids. He had been doing really well, chugging along on his own little curve, that paralleled the “normal” growth curve, just well below it. Now that curve is taking a nose dive and its not so good.

For us that means in the next couple months that if we cant get his weight back up, growth increased than we will be back to the pediatric gastroenterologist to discuss G-tubes and those options. At this point, the thought of a G-tube (feeding tube that goes directly into the stomach) is far less anxiety-provoking than it used to be. If it means there is less stress on our family to get Nick to grow than I am all for it!

We also recently had a very important appointment with Nicholas’ new endocrinologist who is going to be his primary doc (along with our awesome pediatrician). At this appointment we decided it was time to start Nicholas on growth hormone therapy! This is big exciting news for us because hopefully once he starts GHT he will obviously grow better, gain weight easier (hopefully), get sick less, have more stable blood sugar along with other positives. The biggest hurdle we have with starting this will be getting insurance approval. Often times insurance companies don’t approve this therapy since it will be something we will need for quite a few years. GHT involves giving Nicholas nightly injections of the synthetic growth hormone. For most RSS kids the GHT lasts well into adolescence which from an insurance perspective that is them paying for this expensive therapy from age 1 to possible age 15+. We could really use prayer about this, that starting this therapy will be an easy transition and that Nicholas will handle the injections with ease. Also we could use prayer that we will get insurance approval very quickly! Some friends of ours that have a daughter with RSS were very blessed and got insurance coverage within 2 weeks! That is basically unheard of, many families have to fight with the insurance company for 6+ months—hopefully that wont be us!

So while this has been a season of sickness for us its been a huge season of growth also. For me its been growing in my confidence in my parenting, growing in my abilities to turn these things over to the Lord. Without realizing it I’ve been holding on so hard to Nicholas’ medical situation. I felt like I was giving these things over to the Lord but I was still clenching them with white knuckles out of fear that if I loosened my grip things would fall apart. In doing this I was missing out on the relief that comes with trusting in the Lord wholeheartedly, I’ve also missed out on experiencing the overwhelming grace that the Lord could be pouring out on me if I only let Him. He has given me grace upon grace to deal with the circumstances that He has perfectly portioned out for me.

“For in his fullness, we have all received, and grace upon grace” John 1:16

I am so thankful for the experiences and struggles I’ve had in the last year (Nicholas’ medical stuff, my difficult pregnancy, my struggles with not being able to nurse my baby, then the struggles with getting my baby to eat in general, the struggles of having surgeries and illness and many other things). I have really learned what it means to go with the flow, to give it all to the Lord and just to put my faith in Him that the season I was experiencing is just that, a season of my life. So in this season of sickness I give thanks to God that he has portioned and appointed all the seasons of my life and that while things may be hard I know there is another season just around the corner.

For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; time to keep, and a time to cast away; a time to tear, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time for war, and a time for peace. –Ecclesiastes 3:1-8

Feb?? I though it was January!

**Sidenote-- I finally got around to writing a new blog post (wrote it Jan 3rd) but I really wanted to update with pictures so I just saved the written entry to post once I got my pictures uploaded...long story short: I cant find my camera cord so no pictures are going to be in this post...and its really outdated already...clearly blogging is falling pretty low on priority list but nonetheless, enjoy!**

I am writing this more for memories sake—I seriously cant remember anything these days and I know I will look back in sadness that I didn’t write these things down so unfortunately for you, you are going to get to read all the 1^st things and exciting moments in the last few months.

Nicholas had his first Halloween which was great fun (wow this is really long overdue). He went as a giraffe AND a penguin since his mom cant decide on anything. We went to the annual Glenn Harvest party which was good times had by all and I am sure next year Nick will be big time nommin on some 15 bean soup (family tradition). He helped “pass out candy” at his Aunt Katie’s house and loved the excitement once all the cousins came back dressed in their costumes. He was 7 months old for this stuff. At 7 months he also got his first teeth (bottom 2) and started army crawling around.

I’ll do my best to condense and add fun pictures. Since I last blogged lots have gone one. Nicholas had his first Thanksgiving! We traveled up to Cleveland to spend time w/ my mom’s side of the family. We stayed at my Gramma’s house and my sister and her family was there too! It was great fun to watch Nicholas really interacting with his cousins for the first time. He is finally army crawling so he is all over the place and really enjoys playing now. He also became much more vocal during this trip, talking up a storm. He enjoyed meat for the first time and loved that I finally got around to getting him a food mill. His Thanksgiving meal consisted of Ham, turkey, mashed potatoes, sweet potatoes, green beans, corn, cranberry sauce, stuffing and a little whipped cream off mom’s pie. He also had his first surgery and hospital stay in November at 8 months which I wrote about in my last post.

Moving right along—Nicholas had his first Christmas…more like 1^st Christmas week which involved our small group Christmas party where he really enjoyed this creepy squishy chicken thing that pushed out an egg…bad description but it was awful and was one of the white elephant gifts we did. We had Christmas eve at Donnie’s parents house which is always fun. We went over for breakfast at 10 and Nicholas enjoyed a hearty breakfast of ham, eggs (1^st time!), breakfast potatoes, fruit and probably other stuff I didn’t see him get. We opened presents which is mayhem if you can imagine 21 people (including 9 children ages 5,4,3,2,2,2,9 months, 6 months, 3 months) and Nicholas got so spoiled and it was wonderful! We then had the traditional dinner of beef stroganoff and then headed up to my parents to spend the night. We were all surprised when we found out that my brother had booked a surprise flight into Cincinnati to surprise my parents! It was great since my brother has only gotten to see Nicholas one other time (this past July). We had a calm Christmas morning and Nicholas got spoiled again! My sister and her family got into town that afternoon and my Aunt came over as well for Christmas Dinner. Nicholas ate about ¼ of my piece of red velvet cake and ice cream and was whining for more. Now I am sure with all this food talk you are wondering how his feeding therapy is going…well its good. We have transitioned to focusing more on speech but the problem we are having now is that he LOVES table food so much that he doesn’t want a bottle anymore but he still needs the bottle for the calories. Its quite the conundrum but we are working on it. I don’t blame him, who would want a boring old bottle when you could have ham or pie haha

Nicholas also had his first trip to the shooting range this past December haha a couple days after Christmas we went to the range with Dave, Megan and George and Andrew & Stephanie and it was really fun! We got a few looks for bringing babies to a shooting range and no mom, they weren’t down by the shooting guns, it wasn’t loud or dirty haha This is when Nicholas officially said his first word- Bear. He got some books about bears for Christmas and we had been reading them and it must have stuck. Since then he has also said Puffs and Up (when playing with blocks). Then when we were in Indiana for New Years Day celebrating with Donnie’s extended family he waved and said bye bye for the first time! Its probably the cutest thing I’ve ever seen!

Lets see Nicholas also met one of my best friends, Jessi, this December (she was my maid of honor). I love introducing Nick to important people in my life. Donnie and I spent New Years Eve in Indianapolis with my best friend Dani and her husband Dan. It was quite a momentus occasion. We were playing a board game (exciting, right?!) and Donnie got laughing so hard that he was crying. Why is this important you ask? Well lets see, I’ve been with Donnie almost 7 years (since 2004) and I have NEVER seen a tear come out of his eye. I have barely even seen him tear up let alone have an actual tear come to fruition. I was so excited and I am glad to know that my husband does indeed have tear ducts haha. Nicholas also enjoyed dinner at Maggiano’s that night as you can see from the picture.((womp womp...no pic sorry guys!-- its a cute one if I ever get to posting it!)

I think that is all the big stuff that’s been happening in the past couple of weeks. We aren’t too exciting but I love our life. Things are good. Nicholas is good. Life is just good :-)