April 22, 2010

Wow, Charlton and Savannah are two years! Time sure does fly. We are getting geared up for the March for Babies Walk coming up on Sunday and CJ and Savannah have their 2 year old wellness visit tomorrow. Looking forward to their progress thus far. Next week they meet with a team of people at Good Sheppard Rehabilitation Hospital to evaluate them and their progress. Sometimes we come home with a list of new specialist, but I am confident that they are going to get a good report card this time.

Well it's been along time since I have made a post. The twins and and our Daughter Ashley have been keeping us very busy. The twins are doing very well and have hit a lot of milestones this past summer. CJ has learned to walk just prior to his 1st birthday. Savannah also amazes us by her contiued progress. She learned to crawl, sit up and stand all in the same month. Now she is preparing to walk by cruising the furniture. She does tend to drag her leg, which is something the doctor is watching. Both babies are having some challenges with their speech and have now added Speech Therapist to their host of doctors. Savannah is our main concern with the speech because she really does not babble like her brother. Either way, the doctors are super impressed with them as we are. Our daughter Ashley just started Kindgarten this week. We are very excited for her, but also worried about all the new germs she will be bringing home.

The babies both were weighed in yesterday at the Pulmonologist. Savannah weighed 16 pounds 3 ounces and Charlton weighed in at 18 pounds 6 ounces. The Pulmonologist seemed concerned about their weight and wants them both to see the Gasto. Doctor. Currently CJ already sees the Gastro. doctor.

CJ had his CF test again last week and thankfully the test came back negative, again. I think it is safe to say at this point that he definitely does not have CF. The other good news is that Savannah has become more vocal. She is really making a lot more noise and is louder than she has been in the past. Both of them continue to amaze us everyday.

The 3 kids went to the Pulmonologist today. They all did well with the lungs and we are going to start adjusting some of Ashley's medicine. The babies will still be on the same steroids. They were concerned about CJ's weight because instead of gaining weight over the last month he actually lost weight. They gave us a new food action plan for him. They also want him to have the Cystic Fibrosis Sweat Test done again. This was a major concern for us while he was in the NICU and now it is a concern again. He will also be having some chest a x-ray done again. Savannah goes to the ENT on Thursday for a follow-up and to make sure the cyst in her throat didn't get any bigger. That's all for now.

Last week the March of Dimes asked us to be the 2010 Ambassador Family for our area. We will be sharing our story via newspaper, radio, various events and possibly tv.
We are also thrilled to report that Savannah started crawling last Friday. She does seem to favor one leg to push off, but this is something that the Physical Therapist will work with us on.
CJ is also doing very well. He not only sits now on his own, but also stands. I think he will be walking by the end of June. He has also learned to clap.
They also seem to be more into each other. I caught them a few times holding hands. It really is fun to watch them and how they interact with each other.

We are very excited because Savannah just really started rolling over today. She has a few times in the past, but we never really witnessed it. However, today she even rolled over for the Physical Therapist 3x. Yeah!!!! Our little CJ is still cruising right along and is in to everything. He is always still little Savannah's toys. But now that she is more mobile she can get him back. He also cut a top front tooth yesterday. So he now has 3 teeth. We are still waiting for Savannah to cut a tooth, which I think will be any day now.

Last week the babies had their Special Care Follow Up appointment at Morristown. The babies seemed to like the attention and playing on the mat with the doctor and all the other people checking on their progress. For the most part they did well. There are a few things we have to watch. Savannah's head size is on the smaller side so we need to watch that. Also she is starting to rock which could be the sign of some kind of sensory problem, but we will just have to wait and see. The doctor would have liked them to both be sitting up at this point, but neither one are quite there yet. In my eyes they are doing very well and I am thrilled with the progress they have made thus far.

If you would like to join our team for the March for Babies 5K walk on April 25th at East Stroudsburg University, E. Stroudsburg, PA please email me at Jkrause1@ptd.net . If you would like to sponsor our team and make a donation please go to www.marchforbabies.org/krausetwins

CJ and Savannah had their monthly doctor appt. last week and Savannah weighed in at 14 lbs. Not really sure why she did not gain any weight for the month, but no one seemed overly concerned. CJ is now at 15 lbs. 12 ounces.

Today, they had their hearing exam and both passed this time. YEAH.

Tomorrow Savannah has a follow up with the Orthopedic who will do new xrays on her spine to make sure everything is ok. If you re-call the last x-ray showed that she had scoliosis and would probably need to be put in a body cast. However, when the Orthopedic looked at her, he said no way does her spine look like the x-ray.

Wednesday they go to Morristown to meet with the developmental team to see how they are doing over all.

March for Babies

If you would like to join our team for the March for Babies 5K walk on April 25th at East Stroudsburg University, E. Stroudsburg, PA please email me at Jkrause1@ptd.net . If you would like to sponsor our team and make a donation please go to www.marchforbabies.org/krausetwins

Help me reach my goal!Sponsor Me at March for Babies!

March for Babies

Our trip to Philadelphia was a success. We were told by the Neurosurgeon that her had flattening is very mild and she would not require the cranial banding. He also mentioned how good she looks for a 24 weeker. As you can imagine we are always glad to hear that. Actually most of the doctors we go to comment on how great they both look for being 24 weekers.

The babies had their monthly check-up last week and CJ weighed in at 14 lbs 12 ounces and Savannah is on here way to catching up at the whooping 14 lbs. We were shocked to find out that they both had double ear infections so now they are on antibiotics. CJ also cut a tooth on 2/13 and I don't think Savannah is far behind.

The babies were due to have another hearing test, but since they have the ear infection we had to cancel.

Savannah has an appt. with a Neurosurgeon at St. Christopher's in Philadelphia tomorrow to check her head to see if she will need cranial banding. We will not move forward with it unless it is medically necessary.

Last week we had a very nice visit with Grandma Krause. The kids really enjoyed the visit. It was also nice for Chuck and I to have an extra set of hands to help us out.

We also took Savannah to see a doctor about her head shape to see if it was medically necessary to have cranial banding done or if it was more cosmetic. It was difficult to find a doctor to evaluate her, but we did find one about 45 minutes away at the Lehigh Valley Hospital. The doctor started the evaluation process with Savannah and about 1/2 way through we realized that we had the wrong type of doctor. We were suppose to go to a Neurosurgeon, not a Neurologist. I was a little annoyed because I was given wrong information when I booked the appointment. But, in light of the mistake we actually walked out of the office with a smile on our face. The doctor was extremely nice and knowledgeable. She reviewed Savannah's medical file and then proceeded to evaluate her. She said that Savannah looked wonderful for a child that had such a severe brain bleed. She didn't seem to concerned about Savannah's head shape, but said that she would find someone for us to bring her to for a second opinion. We will now be taking Savannah to a doctor in Philadelphia (2 hrs away) to evaluate her. Hopefully it will be all good news.

Now for the bad news, we are all sick with a stomach bug. Hopefully it will be quick. It sure is hard taking care of a family when you are sick yourself.

The babies will 10 mths. old tomorrow.

Savannah had her appointment with the ENT (Ears, Nose and Throat)doctor yesterday. The doctor did a scope on her throat and said her vocal cords look good, but she does have some cyst behind them. This is nothing to be worried about at this time, but she will need to be follow up on in 4 mths. It won't affect her speech, but could affect her breathing if they get bigger. The doctor didn't seem too concerned at this point.