Friday, March 29, 2013
Saturday, January 7, 2012
Margaret Joanna made her entrance November 28th at 9:21pm-- 7lbs 1.4oz and 20 inches long :-) We are completely in love already and I am so thankful for such an amazing blessing!
I started having contractions Saturday night/Sunday(11/27) morning at 3am. They werent super painful but were fairly consistent and I had constant lower back cramping. I went about my normal business (cleaned the house, took a shower, went to church) and all the while the contractions continued so I started to think it was the beginnings of labor not just the false labor I had been having for weeks prior. I called my sister Devon who was my doula (she was my doula for Nicholas too and is finishing up her DONA certification-- shes the best!) since she lives 3 hours away and told her what was going on and she decided it would be worth it for her to go ahead and start coming my direction. She got into town around lunch time and the contractions continued but still werent painful or anything, just uncomfortable.
My sister and I decided to try and go to a few stores and walk around to see if that helped pick things up (which it did as long as I was walking....once I stopped power walking the contractions slowed down again). We got dinner then came home and I called my sister in law, Kate, who is a L&D nurse and asked her to come over and check me to see if that would help get things going. She came over and checked and said I was 3cm, 70% and a -1 station (I had progressed slightly since my last appt where I was a stretchy 2, almost 3 and 50%). Once I was checked contractions got harder and more uncomfortable and were consistent but again after a few hours they petered out and werent doing much. At that point I decided to try and use my pump for a few minutes to see if that would increase the contractions-- same results. It seemed like I could get the contractions going pretty well by doing different tricks but once I stopped they contractions became more mild and less frequent.
At this point I was really exhausted and frustrated because I hadnt slept in 24 hours, I was mentally frustrated assuming that this was going to be days of false, on again off again labor so at 2am on Sunday night/Monday morning I decided to take an ambien to try and get some sleep. I slept for about 4 hours and was woken up to painful contractions.
All day Monday (11/28) was the on again off again labor but with more painful contractions than what I had experienced before. Kate was working L&D and I was hoping I could come in during her shift (she had planned on trading with other people but obviously it would be easiest if I went into labor during her shift). My sister/doula also had to go back home on tues. morning so I was REALLY hoping that today would be the day so I didnt have to worry about my doula not being here in time. The weather was really rainy and cold out so my sister and I decided to go up to my parents house in Glendale and go walk around Tri-County mall. Before going up my sister recommended calling my midwives to see if they would strip my membranes again before doing the power walking. I called and they said to come on in so we went to the Midwives office and they checked me again and I was still only like a 3, almost 4, and basically hadnt changed much since the night before. My midwife, Cindy, said to go ahead and keep my appt for that Thurs. (was SO frustrated, and really hoping she would have come before then) and said to keep them updated if contractions got harder.
So my sister and I drove up to our parents house to have my mom and dad watch DS and we went and walked the mall again and the contractions were getting harder but they petered out once I got home. At this point I mentally lost it-- was frustrated and feeling like real labor would NEVER happen. My sister and Donnie were both trying to reason with me-- I had 2 options: keep doing things to make my body contract in hopes that labor would kick start or try and sleep/relax and see if the contractions stop and give my body some rest. I basically was pissed and didnt want to do either--I didnt want to keep walking, etc. because I was tired and it wasnt working but I also didnt want to try and rest b/c I didnt want to slow the little progress I was having. I was crying and whiney and generally annoyed and frustrated. Thankfully Donnie took initiative and when I called him crying at work he insisted I get in the tub to try and relax and recooperate my thoughts-- I was hesitant too because I was afraid it would get rid of what little labor was still going on and I really wanted to "get the show on the road". I talked with Devon while I was in the tub and she recommended that I plan on hanging out with friends that night-- she didnt think it would be productive for me to have another night of sitting at home, timing contractions and getting frustrated so I called Megan Gautraud and planned to come over to their house and have a glass of wine and try and get my mind off things. With a plan for the evening in mind and laying in the tub I was able to relax quite a bit. The tub reallyrelaxed me-- helped me gain some peace and calm and got my head back in the game. While in the tub my contractions completely stopped, I slept for about 20 mins (very safe haha) and I was pretty sure my labor stopped. When I stood up to get out of the tub though(around 4pm) I had a super painful contraction.
After being in the tub I had markedly more painful contractions but they were still pretty spaced out and not worth timing. I still planned on going to Gautraud's house that evening and I was convinced the painful contractions were still just prodromal labor since they were spaced out. Since we were at my parents house my dad said he could keep Nicholas overnight there so I could have an evening to myself and I wouldnt have concerns about someone watching Nicholas to keep me worried. We ate dinner around 5:30 and my sister and I decided to head back to my house at 6pm.
At this point the super painful contractions started to seem more consistent but I was convinced labor was never going to happen so I didnt think much of it. On the 40 min drive home I decided to time the contractions and they were about 5-6 mins apart, almost 2 minutes long. But I was still talking and laughing in between them so I thought I had a while to go. Once we got home I debated if Donnie and I should try and go out still and Donnie went ahead and got in the shower to clean up after work while I decided. While he was in the shower the contractions got SUPER hard and a lot closer together...I was crawling around my house on all 4's to work through them and my sister thought it was probably time to head to the hospital and I agreed.
The car ride to the hospital was TERRIBLE the contractions were right on top of each other and I didnt know it at the time but I was going through transition. I can remember praying that God would give me strength and I had some serious self-doubt that I would be able to do this. I also remember Donnie driving past the hospital (to go to a different entrance) and I looked up and basically cried "There's the hospital-- why are you not going there?!" haha While in the car the midwives called me back (I called them when I left our house to let them know I was on my way) and when I talked with Nancy I guess she could tell I was in serious labor so she said she would direct admit me so I didnt have to wait in triage (HUGE blessing!)
When we got to the hospital Donnie dropped me off at the entrance to go park and I had to get down on all 4's in the lobby of the hospital to work through the contractions. I was having self-doubt, moaning, and really working hard. Pretty sure I scared the few people in the lobby haha I had a tough time making it up to the L&D floor-- I had a long contraction in the elevator going up, dropped down on my hands and knees and refused to get out of the elevator. Devon was like you HAVE to move regardless of the contractions so I finally got up to L&D and they skipped triage for me since I was clearly in hard labor.
I got back to my delivery room at 8pm. It was very strange because after about 10 mins of being in my room the contractions became much more managable. My midwife checked me and I was 7cm, 100% and +1. Things were obviously going fast-- I labored and was handling the contractions really well. They were about 3-4 mins apart and about 1.5 mins long and while I worked hard and was in a lot of pain during each contraction I was laughing and joking and able to rest in between each one. I started having a lot of pressure about 30 mins after being checked and was checked again and was 9cm. At this point my midwife told me to just listen to my body, do what I needed to do and follow its cues as far as what position to be in, when to start pushing, etc.
I used the squatting bar, got on all 4's in bed, laid on my side, laid flat and was moving a lot between contractions to try and find a position that worked. I was bearing down and pushing really hard with each contraction and was starting to feel scared because I was feeling physically tired and was worried that pushing could be a long process. I probably "pushed" from about 9pm until she was born at 9:21pm. It wasnt at all the traditional pushing experience I had with Nicholas it was much more organic (cliche I know) and me just listening to my body. Around 9 or so more family/friends came (Pam, my mother in law, Kelly & Kara my 2 sister in laws and Megan my best friend). I remember them coming in the room but I was pretty in the zone at that point and was pushing with each contraction but still pretty calm. I finally found a comfortable position laying on my left side and had 1 really hard push and my water made a huge pop and leaked everywhere and then things got going really fast.
After my water broke I remember Kate looking down and then quickly calling my midwife Nancy back in the room. At this point I reached down and felt Maggies head and realized it was really time! I couldnt stop pushing and my midwife had me open my legs more and turn onto my back and 3 minutes after my water broke Maggie was born! It was crazy and intense and fast and amazing all at the same time! My midwife literally almost didnt have time to get a glove on since it was only minutes from the time my water broke to her being completely out. I didnt tear at all and we waited till the cord stopped pulsing before Donnie cut it. She latched on right away and I was able to get 1 entire hour of skin to skin before she was weighed or touched at all by anyone but me :-) It literally was perfect! Another bonus of things going so quickly was they didnt make me get the required IV/Heplock which after having so many IV's in my life I was INCREDIBLY thankful for!
While early labor was not fun and mentally frustrating my hospital experience was perfect and I wouldnt change a single thing. I am so blessed to have so many wonderful support people in my life to help and encourage me-- I love having the women I love the most be there for the birth of my first daughter-- I know it is an experience I will never forget :-) Recovery after Maggie has been really easy, nursing did not go well at all so after about 3.5 weeks (and Nicholas getting hand foot and mouth and me getting mastitis) we decided that transitioning to formula was our best bet. Nicholas is absolutely in love with his little sister (is constantly wanting to kiss her and yelling "Hi baby!") He is such a good little helper boy-- helps hold the bottle while feeding Maggie Jo, brings me her diapers/wipes, blankeys, etc.
So now I am sitting here, looking down at the sweet (almost 6 week old!) baby sleeping on my chest and I am just overwhelmed by how blessed I am-- God's amazing and never-ending grace and mercy has been so apparent as our family has transitioned from 3 to 4. I could go on and on about how thankful and happy I am but I'll keep those thoughts for my prayer journal haha Nevertheless-- this is the story of how sweet Maggie Jo made her entrance into this crazy world :-)
Wednesday, August 3, 2011
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!
Tuesday, August 2, 2011
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!
Wednesday, April 27, 2011
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 1st 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!
Thursday, February 17, 2011
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
Friday, February 11, 2011
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 1st 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 1st 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 (1st 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 :-)