Life with a 28 week preemie & his miracle sister born & living with an Omphalocele birth defect

Life with a 28 week preemie & his miracle sister born & living with an Omphalocele birth defect

Friday, July 31, 2009

Two Year Check Up

Ryan had his 2 year well baby check up yesterday and although we were disappointed that his regular pediatrician wasn't able to see him due to an emergency, we were pretty satisfied with the visit. His two year stats are:

Weight: 27 lbs.
Height: 35"
Head Circ.:18.3"

He's still on his own growth curve and doing very well. We were assured that weight gain will slow down almost to nothing since most toddlers are so active at this age. The pedi expected Ryan to probably only be 30 lbs. by the time he's 3 yrs old. So,it seems Ryan will be tall & thin, which is not a bad thing to us.

The other concerns we had were addressed and apparently most aren't anything to worry about...go figure. Regarding his BM's that aren't formed, apparently not all kids have formed ones at this age. If he was not pooping or clogged up, then it would be an issue. We got his iron tested and thankfully it was normal. We have been giving him vitamins with iron so we will continue to do that a few times a week. They had to draw blood for the iron and to test for lead so they took a vial of blood. When the nurse stuck the needle in his arm, Ryan didn't even flinch and even watched the whole thing! And then smiled at the nurse and said bye. We then addressed our concern about him falling when his leg gives out, holding his hand to his head like he had a headache & for several days he would have dark circles under his eyes. So, she referred us to the Pediatric Neurologist. We are scheduled to go in 3 weeks. We still have the Physical Therapist coming next Friday as well. I trust her professional opinion since she knows Ryan very well from having been his therapist for almost 10 months last year. I want to mention to her about getting his ears checked. The pedi said his ears looked great & all clear. Even after I asked if he could have fluid behind the ears drums she said No. From what I understand they can't see behind the ear drums though, that he would need to see a ENT or have a hearing test done to find out. I know he can hear, even at a whisper but even a little bit of fluid can cause unbalance..right? I have to force myself to stay off the computer except for my usual websites because if I start googling, "toe-walking & falling down" it's not only overwhelming, it can be depressing. There's so many things he could have but then it could be something very minor.

Ryan still had shots to get since he's on a delayed schedule. He is now almost caught up so we will go back in 6 months to get the second dose of Hep A and then at 3 years old he will get the MMR. We still have not decided on the Chicken Pox Vax so that is up in the air as to when or if he will get that. He got 3 shots and didn't even cry! He's becoming such a big boy. He didn't get his afternoon nap so he was very tired last night and had a slight fever today probably from the shots. These pictures seem to say it all as to how he was feeling:

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Sunday, July 26, 2009

Waiting & Worrying

"Try not to worry" is what I tell myself and others tell me but as a mother how can you not worry? I do my day to day functions but everytime I look at Ryan something just tells me something is not right and I can only hope my gut instinct is wrong.

For the past several weeks, well actually over two months, Ryan has been walking on his toes. My past blog posts have talked about this issue. So, we scheduled for Ryan's Physical Therapist that he had last year (for 9 months) to come and do an evaluation. She was on vacation but last week, we finally got that scheduled for Aug. 7th. The toe walking is not a big big issue to me since from what I've read, A LOT of toddlers do it and grow out of it. However, what does have me concerned is his falling & tripping. This has been going on for a couple months as well but sporatically. For the past two weeks though it's become several times a day, every day. Ryan will be walking or running and just fall or trip over his feet. Unfortunately, I have only seen him fall occasionally and that is when he trips over his feet. It's usually the "thump" of falling that gets my attention. Clumsy you say? Well, maybe, but Dean and my mom have both seen the fall that occurs when his right leg just seems to give out. These little falls, have given Ryan several cuts & scrapes which makes me feel terrible for not being able to help. He is always on the move...especially outside, so there is just no way, Dean or I can hold onto him every second and honestly I don't think that's fair for him. He needs to run & explore, not be cooped up in his stroller and miserable but it still makes me feel terrible.

We have his 2 year well baby check up Wednesday so along with this concern, I will be bringing up other things as well. We've been blessed to have a great pediatrician and we haven't seen her since his 18 month appointment so I'm anxious to see her. Other things I'm concerned about are his poops. His poops are not and have never been formed. How are we suppose to even start thinking about potty training with this issue? Plus, at over 2 years old why would he have poops that aren't formed?Does is have something to do with his intestine? Is he possibly lactose intolerant or have a milk sensitivity? He's also still taking 2 naps a day. I know each child is different on their need for sleep but Ryan just can't seem to get by without 2 naps. On occasions when we are out doing something special, like taking him to Busch Gardens or some other fun place, we forgo the morning nap, however, we can tell he really would like to take one. He rubs his eyes and starts getting grumpy. He WILL NOT take a nap in his stroller or car seat though unless he is super duper tired! So, normally he wakes up between 6:15 & 7am and wants a nap about 9:30 or 10. He takes anywhere from a 1 hr 15 min-2 hr nap and does well until early afternoon. About 3 or 3:30pm he is ready for another nap and sleeps for another 1 hr 15 min-2 hrs. I definitely wake him up by 5:30pm since I don't want it to affect his bedtime, which is at 7:45-8pm. He sleeps 10-11 hrs at night. It just seems to me that his stamina would be better at this age. We give him Poly-Vi-Sol with Iron since he did have low iron from the time he was born (he even had 2 blood transfusions in the NICU) up until he was 9 months old. We don't give it to him every day since from past experiences it tends to clog him up. So, I'd like to get his iron checked and maybe that's the reason he is tired.

On another note, Ryan really likes his bean bag chair we got him for his birthday and the table & chair my parent's got him.
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Sunday, July 19, 2009

Ryan's 2nd Birthday

Yesterday was Ryan's 2nd birthday. Has it really been 2 years??? It really does not seem like it has been 2 years since he was born, 2 years since Dean and I were scared of what the future would be like, scared because we didn't even know if Ryan would live. I won't lie, I still think about those NICU days almost every day...not every day but at least every two to three days. Usually it's on my way to work. I work less than 5 minutes from the Children's Hospital Ryan stayed in for 69 days. My drive to work is the same route we used to drive at least twice a day. Other times, memories come back when I'm telling Ryan "no" for the hundredth time that day or sitting him on the bottom step for him doing something that is a big no-no, like throwing things after I tell him not to or hitting me or daddy, even after telling him we do not hit..Preemie guilt is what I call it. I feel guilty for having to punish or raise my voice at him even though I am so thankful to have him. So, for it to be 2 years already seems amazing. Ryan is amazing! His energy, his love of cars, trucks & trains, his excitement when he sees daddy's truck pull up in the driveway, all the words he repeats when we ask and his inquisitiveness..especially with anything electronic.

For his birthday party, we decided to go with the Disney Cars theme. Since I'm all about the decorations and the party store did not have hardly any decorations for our first & second theme (Tonka trucks & Hot Wheels), we went with Cars. My friend Tana came over early and helped us decorate & went with me to pick up the balloons and cake. We got car cookies from the bakery that made our cake and Tana also put together favor bags with those cookies.

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Ryan had a great time and loved being the center of attention. He got lots of toys that he can not only play with now but also will grow with him and last him several years such as a tee ball & basketball set both from Little Tykes, an activity table that he can sit at and color or do crafts & the train table we bought him. He also got some much needed pajamas & bath toys!

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We had a hard time getting Ryan away from his train table to get him to the table to sing Happy Birthday. After everyone enjoyed the cake and ice cream, we all went outside so the kids, older & younger, could take a hit at the pinata.

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We all had a wonderful day and were exhausted but of course it was worth it!

Saturday, July 18, 2009

Vacation days!

Dean and I decided to take some time off work this past week to get some things done around the house and to spend time taking Ryan to a few places to burn off energy and have fun....also, to give my mom a vacation from her nanny duties :-)

We went to visit my cousin and her two daughters a couple hours away early in the week and Ryan had a great time. This was the first time Ryan met his 2nd cousins who are 4 yrs old & 2 yrs old. Ryan had fun playing in their playroom and pushing around one of the girls Thomas the Train ride on car. After we visited and went out to lunch, we went over to the mall and I got to shop at Pottery Barn Kids--one of my favorite stores now that I have a kid! It's a good thing that store is not closer because I would be in there way too much spending way too much..haha!

Tuesday we decided to take Ryan to the zoo. We weren't sure how he would act, since he usually likes to pet the animals anywhere we go that has animals but the weather was nice so we tried it. However, just as we thought, he would rather just pet the animals then stroll around in his stroller and look at them. We made the mistake of taking him out of his stroller to look at the zebras. While he liked the zebras, he did not want to get back in his stroller...he just wanted to run around. So, back in the stroller he went and of course he threw a tantrum. Fortunately, it was short lived once he saw the giraffes. He seemed to really like looking at the giraffes since they were close to the observation deck. We finished strolling around and ended the visit by riding the little train they have that circles the zoo.

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The next day we took Ryan to the local Children's Museum. I had been there many years ago with my friends son so I knew Ryan would have a great time just running around with the other kids. The museum is not like a typical adult museum with art or things you can't touch. The whole museum is about interaction. Every section has a purpose. For the younger kids, it's all about climbing, touching & play. For the older kids it's also about play but they can learn as well. They had a fire truck, police motorcycle, a city bus, a bubble room that the kids could blow bubbles and much much more but Ryan's favorite section was the trains!! There was a huge train setup and then there was a room that had two Thomas the Train tables. Ryan spent about 30 minutes in there playing with the trains..we literally had to pull him out because it was getting crowded and we thought it was only fair to let other kids have a chance to play. This sparked an idea with Dean and I...that we needed to get Ryan his own train table for his birthday.

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Since Ryan loves the water, we took Ryan to a local water park on Thursday. We took my friend's son and we met another friend and her son there. To say that Ryan had a blast would be an understatement...like the energizer bunny, he just kept going and going and going. What was nice about the water park was the fact that it had a children's area. It had slides that were plastic & the water was only 1 ft deep. Another area of the park has a big pool and every few minutes it starts making waves, like the ocean. We took Ryan over there and he loved that too! I can tell we will be at the beach & pool a lot as he grows.

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Sunday, July 5, 2009

July 4th weekend

I had a nice 4 day weekend because Dean had off Thursday..since my office was closed Friday, I decided to take off and we decided we could take Ryan for his 2 year pictures. This time we decided to take advantage of JC Penney's coupons and try their Portrait Studio. While, Portrait Innovations is wonderful and we will still get our family Christmas pictures taken there, based on this experience JC Penney will more than likely be our "every other celebration portrait studio", like Easter & birthdays. We were very pleased with the photographer's patience, demeanor and she seemed to know all the right noises & actions to perform to get Ryan to smile (something our last photographer at PI wasn't good at). As always it was very hard to choose from all the poses but we (well, mostly me since Dean was trying to keep an eye on Ryan running around)settled on several including these:

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I spent the next day with one of my friends and we went down the harbor where they were having the annual Parade of Sail, a boat parade. Ryan enjoyed all the different boats and that seemed to be his favorite word for the weekend as he kept saying boat boat, everywhere we went.

We knew Ryan would probably not be able to stay up for our local fireworks, since they didn't start until 9:30 or 10 & Ryan is almost always ready for bed by 7:45 so for the 4th of July we just decided to have family over and have a cookout. We had a nice day with my mom & the weather was wonderful so we let Ryan have some fun in his pool.



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Wednesday, July 1, 2009

Progress

Ryan has been making great progress with his speech. He is willing to try and repeat things back to us when we say them...well most things. The speech therapist is very pleased with how much he is saying now. He still babbles quite often although most of it is unrecognizable so I guess the next step is getting him to say the words he does know, on his own rather than us telling him to say a particular word. Ryan continues to amaze me with his receptive communication. Although he doesn't say them (except for mouth), he knows all of his major body parts and will point to them when asked. This also is true for the animals on the See-N-Say and the animal puzzles he has.

We are going to have a physical therapy consult with the therapist Ryan had last year. For the past month or a little longer, Ryan has been walking on his toes. The ST gave us a brush tool to use and we've also been massaging & stretching his legs. While it's helped some, he is still toe walking, especially in the house since he will not keep shoes on (he does it more when he is barefoot). So, I wanted the PT to come and take a look and maybe give us some exercises and tips on what we can do. Hopefully, it's nothing serious but as a mother I always worry--and googling the topic doesn't help either!

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