Happy 1st birthday Sophia!

March has been a great month for Sophia! Not only did she celebrate her big no. 1, but she also has made a lot of headway with feeding. Oh what a difference a therapist can make! Sophie love her new speech therapist in Saginaw and so do we. Not only does Sophie respond well to her but , she also has given us wonderful guidance on feeding. I am ecstatic to report that Sophia no longer is on the pump at night. This is largely in part to the new therapists guidance. Through the month we have removed feedings and added volume to her tube feeding. For example at the beginning of the month she took roughly 155ml six times a day. Now she is taking 220 four times a day and she is eating about 3oz of table foods a day. while that may not seem like a lot it's huge for Sophia. She had chewed on cubed potatoes, corn beef, cooked carrots, broccoli, and green beans, Ice cream, puffed cereal, cheese, beef sticks and she has tried many of the foods we have at dinner as well.

Although she is a light weight at 18lbs 11oz she makes up for that with her height of 30 1/2 inches tall.

Sophia also has grown accustom to being up right. She has taken as many as 14 steps in dependantly. When she is unsure she either squats and crawl or she finds furniture and walls to toddle along. Our Pediatrician was extremely impressed at how she toddles around the exam room the whole time she was there for her one year well child exam.

Sophia also had a lot of fun this month watching a parade in Bay City and Celebrating her cousin Max's birthday. For Sophia's birthday I got her a monster cookie (liam got one too). She wondered what is was and then really started having fun with it. She got more messy eating/playing with her monster cookie then she did playing with her cake at her birthday party (a few days later).

Sophia is truly an amazing little girl, she is still a very happy and content little girl. the only times she makes unhappy noises is when she is fighting sleep, got hurt or some one is trying to take something away that she still wants.

This year has been a truly amazing journey...and everyday we still thank god for everyone who helped us in any way or are still helping us.

Busy Busy little girl

Sophia motto this month is...Speed, I am speed. We have never seen a baby crawl as fast as she does. It is literally so fast that it is like she is running on her hands and knees. When she reaches her destinations she stands up like a pro and she frequently cruises (walks) along the furniture. Sophia is really trying to walk as well she has now taken six steps in a row! It won't be long before she is chasing her big brother around.

Sophia has had allot of fun this month, she had a girls weekend with maw maw and mommy when the boys went up to Aunt Cindy's cabin. During the girls weekend she played while mommy and maw maw started building a crazy troll sculpture out of paper mache'.

Sophia also visited the Midland Center for the Arts and saw Dinosaurs with he Brother.

As far as eating goes it seems that we take two steps forward and one step back. She is still trying to eat. In fact she really likes pasta (especially the pasta nests that a friend of mine gave us), string and regular cheese, puffed snack foods, corn beef hash and jello to name a few. The step back is that it is still not enough to sustain herself. She still receives night time feedings to help her grow. Which can be a little scary for parents of a Roley pole-ly baby. At night we connect her g-tube to an extension to a feeding bag that is connected to a feeding pump. The pump kicks on at designated times to give her food. While most people say "you mean you don't have to get up with her to feed her in the night...what a godsend..." What people don't understand is that she still wakes for her pacifier and more importantly is that the feeding tube becomes a choking hazard for a baby who twists and turns through the night. We have on several occasions checked on her and she has had the tube wrapped around herself. Having a child with a g-tube throws all of the newer baby "crib rules" right out of the window. If you think having a blanket in the crib is dangerous try having a long tube that is tethered to a pump and the baby herself. We might have a pump...but night times are still very interesting at our house.

Last month I spoke of our therapist who did not believe what we were telling her despite seeing it with her own eyes. Needless to say after a few more meeting like that one we decided that she simply was not a fit for Sophia. We have since cancelled the appointments through that organization and have taken her to see a therapist who was recommended to us by Sophie's wonderful physical therapist. Sophie has seen the new therapist once and we can already see that this was a wonderful decision and we believe we have finally found Sophie a Speech therapist that is a fit for her. We are confident that the new therapist will get Sophia moving forward with eating as we do. We are very, very excited about this change for Sophie!

It's hard to believe that Sophia is almost a year, We have so much to be thank full for and there are so many people who have touched ours and her lives though this journey. Thank you again everyone! -

10 months and Sildenafil free!

Sophia has been pondering the last several months what life would be like without her Sildenafil (revatio a.k.a Viagra) for her Pulmonary Hypertension. She now knows that it is perfectly Divine. She has been completely weaned off the medicine for about a month now and results of an Echo-cardiogram show that her Hypertension has resumed to what typical babies have and has remained there. The Cardiologist told me the news and then told me there is no need for a follow up appointment with his office as long as she keeps breathing normally. We will of course follow up in Cincinnati for years to come (they like to keep track of there CDH'ers). YEAH! SOPHIA! Sophia continues to do well with her Simulac formula and is now trying small sips of the formula from a sippy cup. When My mom told the speech therapist this, the therapist did not believe her and almost did not believe it when she even watched Sophie do it. Sophie is also trying to eat things- well everything in fact, from tags on items in the store to Cheetos. While she is not eating full portions she is indeed trying-a fact that once again bewildered our therapist. Sophie successfully has eaten green beans, portions of beef sticks, corn kernels, Cheetos, corn beef hash, jello, ground up chicken, pork and beef. She has no interest in baby food, our thoughts about her eating is as long as it is food it is great for Sophia. While giving her "junk food" is not the ideal situation it is something she finds enjoyable to have in her mouth and it has higher calories which she needs as well. I use junk food in quotes because at this point we have read enough on the Internet to believe that no food is really junk food it is just calories and if you manage your calories in a balanced diet then it is not really bad. ok enough on that topic what matters is that she is putting food in her mouth at this point along with chewing and swallowing it and that in our eyes is Fantastic progression towards eating as we do.

Now you see em now you don't

Or as we think Sophie is saying... I can see clearly now my bangs are cut! The debate of cut or not to cut came to a close this month with mommy pulling out the old scissors and giving Sophie her first hair cut. For those of you out there wondering...no we did not keep a lock of her hair. We have the photos to document it. She is just to cute to have that hair covering her face and barrette's at this age..ha! It was just a game to see how fast she could pull them out.

Liam is definitely showing his love to Sophia these days. He will introduce her as My Sophia and he wants to hold her more and more. Sophie loves her big Brother and he is the one who can make her laugh the fastest of everyone. Liam also loves her toys (he thinks they are all for him), we remind him that if he plays with Sophie's toys that he can't get mad if she touches his.

Bitter Michigan weather has kept us indoor for most of the winter but we did get the opportunity one day to try snowshoeing. About a 1/2 hour after we started we were back to the car but at least we can say that we went.

Sophia also played outside in the snow a little with her big brother. He made a snow fort/castle with daddy and then wanted to show Sophie how to eat the castle.

Merry Christmas, Happy New Year and Happy 9mo Sophia

Wow time flies when you are having fun and Sophia has had a lot of fun this month. December always proves to be a busy month with the holidays but Sophia adds a new dimension to busy. This month she decided that four teeth simply were not enough and has been working on cutting four more. Luckily this time it has not made her as puky as it did the first time. Despite teething she still remains her happy bubbly self. Sophia has also decided that laying and playing is for the birds and she has decided that it is time to get up and play. While she had become very adept at sitting these days she really wants to be mobile and is bouncing on her hands and knees and loves to pull herself to a stand either on furniture or with our fingers. She gets the biggest grin on her face when she pulls herself up and then starts bouncing. Eating orally continues to be a challenge for Sophia but even with teething she is willing to give it a try. Over the holidays she got to nibble on a bunch of calorie laden table foods such as potatoes and gravy, green beeners, jello, squash, ham, turkey, candy canes and of course a cookie morsel or two. While we were in Cincinnati they really encouraged us to introduce her to table foods due to their higher calorie count then baby food. The higher calories will help our skinny Minnie to possibly plump up a bit or at least help her maintain her weight since she uses more calories then the typical baby to do every day activities. Another big change on the feeding front is that she is now on Simulac Sensitive formula and off of Elecare. Simulac is a milk based product while Elecare was an amino acid based. This change signals that her diet is becoming more like a typical babies at 9 mo although the volume that she takes is less. Sophia gets 130ml (around 4 1/2 oz) of 30 calorie formula six times a day where as other babies at this point are taking 6-10 oz of 20 calorie formula 5-6 times a day.

Another big thing for Sophia is that she is being weaned off her Sildenifil (for her Pulmonary Hypertension) by the end of this week she'll be completely off of it and then January 24th we'll go get an Echo cardiogram to make sure her Pulmonary Hypertension has remained at the normal level. If it is still normal three weeks after being off of the medicine then she'll be free of another medicine and they will monitor the hypertension hit at check ups. With this medicine gone she'll be down to one prescription. Yeeeaaah Sophie!

Looking beyond the food, teeth and her prescription changes she really enjoyed the holidays as well. Christmas was full of hustle and bustle on the on the 22nd Sophia celebrated with Aunt Sarah and Kevin. On the 23rd Sophia and Liam celebrated Christmas with the Hubers, Grandma Martha, Grandpa Cal, Great grandma Irene, Jake, Heather, Marleen and Justin. Christmas Eve was spent with Great Grandma Dorothy, Cindy, Glen and Britta. The fun continued Christmas day with presents from Santa at home and then off to Mama and Papa Bobs to celebrate with Scooter, Sherri and Max. Sophia did wonderful through all of the commotion and really ripped the packages open like a pro. While she did not get to see her GAS and GUD from Kentucky she really enjoyed the beautiful quilt and cool moose they sent up for her and she giggled and giggled when her brother Liam played with the really cool finger puppets he got from them as well.

December ended with fun at the Children's museum where they celebrated New years every hour on the hour and Sophia sported a New years Tiara (yep I did say tiara- stop laughing and get back up on your chairs). Sophia and Liam both slept though the New Year celebration at Mama and Papa's. 2010 was an epic year for Sophia and we all hope and pray that 2011 will hold many more wonderful stories.

Pulminary Hypertension at 8 months

Well a big hi there and hello to everyone! Another month has passed and we have been having a blast! We are happy to report that after 8 months that Sophia's Pulmonary Hypertension is now at a normal level. We had an appointment at our Cardiologist in Saginaw in November and they told us that her levels were near normal and our trip to Cincinnati confirmed that is was indeed at a normal level. This means that Sophia is on her way to being weaned off her Sildentifil. Yeah one less medicine! While November had been a good month overall Sophia has had a few rough weeks, comparatively speaking. In October her overall pukyness had almost ceased. She'd have whole days that she would not get sick. This was not the case in November She had about two weeks where she got sick again some times every feeding of the day and even at one of the night feedings which hasn't really every happened before. We believe this was caused by: A. getting the first phase of the flu shot and B. Cutting teeth. Sophia was a teeth cutting monster she got two lower and two upper in the same week and a half. Since the teeth have come in her pukyness has returned to a more normal level (once or twice a day usually due to her "wet burps"). Despite the formula explosions Sophia remained quite happy and content. While she was having a harder time with her formula we held off on working on oral feedings, but have resumed them as well. She is doing well chewing on mum mum crackers (also known as rice rusks) she also chews on baby wheels at meal time. Over thanksgiving she tried chewing on bread, Had a little bit of cheese and really enjoyed tasting whipped cream. Although she is not taking full meals at this point by mouth she is indeed moving forward. Last night she actually ate 5 little puffs (both chewed and swallowed them). Sophia is also up to multi grain cereal and we've been told she can try stage two foods and introduce meats to her diet.

November was full of more firsts for Sophia. She has teeth as you have already heard. She got to meet and spend time with her cool cousins Bjorn and Britta at thanksgiving. She attended her first kids birthday parties(besides Liams), for her cousin Justin and Lilly one of our friends daughters. She and her brother also visited the Saginaw Children's Museum over veterans day.

December 1st marked our return to Cincinnati for her 6 month since discharge check up. Our 6 hour car ride without kids turns into a 9 hour ride when stopping for feedings and letting the kids stretch here legs but we arrived in Cincy around 5 p.m. We were able to once again stay at the Ronald McDonald house. It was so wonderful to see all of the staff again and I believe they were as excited to see us as we were to see them. It was like stopping in at a relatives house.

Sophia's appointments were on December 2nd, she had a chest x-ray, a sedated Echo-cardiogram, EKG and appointment at the High Risk Clinic. All went well. As I stated earlier the cardiology department reported that her pulmonary hypertension was at a normal level and they would call our Cardiologist in Saginaw to try to wean her off her medicine sooner then the Saginaw Dr. planned.

We talked with Dr Haberman and Jackie the Nutritionist at the High risk Clinic. They were very pleased with Sophia although they thought that she needed to gain more weight, so they upped her calories for her formula. They also Gave us a sample of a different formula to try to see if she could come off of the Ellocare and onto a more normal over the counter formula. So far so good on the conversion. When discussing her weight they explained that she will always be a person who will need a higher caloric intake due to her working harder to breath then typical kids. She'll be able to have the four course meal and keep a more slender figure because she burns more calories simply by working a little harder to breath. They also looked at her chest (ribcage)which has an depression in the center of it. We thought that the dip was due to where they tied the hernia repair off during surgery. They told us that it is very common in CDH kids and it was actually caused by the cartilage in that area being soft as a baby. With her working harder to breath and probably pulling her shoulders up to help her breath it caused the depression. They just told us to watch to see if it gets any worse. They told us they typically it doesn't worsen but it can cause bras to fit funny in the future and that later on in life if it is indeed a problem that cosmetic surgery can be preformed to make it be more typical. They also told us that she should have a yearly chest x-ray to watch for Scoliosis. It's a funny thing going to these clinics, they really lay out all of the possible problems that are minutely possible and can sometimes get you to worrying about things that most likely will not occur, but I guess it is good in the long run to be prepared with the knowledge. In knowing all the possibilities we know how truly blessed we are for her to be in such good shape.

Sophia was also able to see Jessica and Deidra, two of our wonderful nurses from the RCNIC. It was so good to see them again and they were both amazed with how big Sophia is and how well she was doing. It is truly amazing the bond that Sophia formed with her nurses. She had not seen them for 6 months and you could tell that she recognized them. We too felt that bond, seeing them was like seeing long lost friends. We can't wait until our next appointment in 6 months to see them again and hopefully see others that we missed this visit!

One thing we kept thinking when going for the visit and staying in the McDonald house was if we would see other CDH parents that were there when we were 6 months ago. We might not have seen them but we saw their stories still up on their room doors and their names on the in and out check in board. Seeing this once again reminded us how truly blessed we are in so many ways and our thoughts and prayers go out to all of those who have little ones who need medical attention.

Sophia did get to have fun on the trip as well. She racked up some more firsts this visit. We all went to the Newport Aquarium and saw fish and sharks, not to mention Santa Scuba diving! She chewed on crust at Deweys Pizza (yum) and hung out with daddy in his favorite Irish pub, Molly Malones, not once but twice this trip. Sophie and Liam tried to have an ol'fashion Irish brawl while there but were laughing to hard to actually throw a punch. The kids also got to go the Children's Museum in Cincy where She watched her brother and daddy get rained on by balls in the ball pit.

November and early December were a hoot, Lets see what fun the rest of December brings!