Friday, March 29, 2013

Doc-Band

Yesterday was an extremely long day for our little boy. We headed out for this Hyperbaric treatments at 8am. His first treatment was as usual at 9am, and his second treatment was at 12pm. Gran met us in Dallas with Kennedy for their appointments at Cranial Technologies. Drake's fitting took longer than anticipated, but he responded to it better than we had thought. He doesn't love his helmet, but he tolerates it very well. We finally arrived back at Gran and Poppy's at 6:30pm. Thank goodness we packed extra bottles!

For a little baby boy who is a "hot box," the helmet just adds to his sweating. He reminds me of Gran with "hot flashes!" We have been advised to dress him unseasonably cool. So, if he looks like he is dressed for summer while it is still quite cool in Dallas, please understand. Kennedy will receive her Doc-Band Helmet on April 9th. Thanks to information provided by others, we have been informed of local Wrap Buddies through a company called 360 Wrap. I have filled out the application, and I am awaiting a call back to schedule a date for getting Drake and Kennedy's helmets "wrapped."

Drake has done VERY well with his bottles this week! In fact, for most of the week he hasn't needed his pump at all during the day. He seems tired as the week progresses and we are back to about half by bottle and half by pump, but I am really proud of how well he has done this week!

Kennedy is twisting and turning everywhere! That baby girl is all over the place! She makes it quite a challenge to change her diaper at the doctor's office. She is also sitting like a big girl for LONG periods of time! I am really impressed with her stability. Now, we just need to work on sharing! She isn't too bad with Drake, but she snatches toys and pacifiers right out of her cousin's hand. She doesn't even want the toy or paci, she just seems to want to take it away from him. Looks like we have our work cut out for us with this little girl!




























Tuesday, March 26, 2013

Yea-Yea's Visit

We are so excited that Drake and Kennedy's other grandmother, Yea-Yea, was able to come visit us in McKinney at Gran and Poppy's house! We haven't seen her since they were very tiny in the hospital, so even though they are still small, they seem very big compared to the last time she saw them. The real treat this time is that she is able to hold them, feed them, and snuggle them. They both still love the songs she used to sing to them back in the hospital. Yea-Yea was even able to move some things around at work to stay a little longer! I don't know what to do with myself...with two babies and two grandmothers on duty, I have actually had a little time to myself. Hmm...what did I used to do with my free time...well, this time I organized baby clothes and did a little laundry. I now realize that I probably should have taken a nap.

This Thursday Drake is scheduled to receive his doc-band helmet after his Hyperbaric Therapy. Kennedy is supposed to go with us for her final measurements, but they called this morning and there is a hold-up with insurance, so she may be postponed. Hopefully this will be resolved soon. It looks like either way Thursday will be a long day for us.

This past weekend flew by like the blink of an eye, but we loved every minute that we were able to spend together as a family. Brian was able to see how active Drake has become with his Hyperbaric treatments and experience him removing his cannula all by himself on a regular basis. They both grew considerably over the past week. I tried 3 different outfits that fit them last week and they were all too small this weekend. I love that they are outgrowing the 3month outfits! Then 5am Monday morning put us back on the road to Dallas and Daddy back on his drive to Houston. The countdown is on for our Saturday reunion.

























Friday, March 22, 2013

Nine Months Old!

Can you believe that tomorrow these angels will be nine months old? Wow! Of course, they are not considered a true nine month old, but they are both making progress, each in his/her own way.

Kennedy is turning on the charm more each day. She plays with her toys and is sitting alone for longer periods everyday. She definitely loves attention. Gran had noticed that she doesn't mind if she is holding or taking care of Drake, but Kennedy gets upset if Gran is holding or caring for their cousin, Jacob. She notices everything!!

At the end of today's treatments, Drake has logged ten hours of hyperbaric therapy. He will have thirty more to finish this complete round. We plan to take a few weeks off and resume with another forty treatments. We feel Drake is using his arms and hands much more, is more active over all, and is pulling on toys and putting his fingers in his mouth. He focuses on a Sponge Bob toy and Sesame Street or Baby Einstein video's while he is in the chamber. He is also making a few different noises and sound patterns. We know these are baby steps, but each new activity is a good step for our little Drake.

We have met several other patients receiving the Hyperbaric treatments. One of our new friends is from Austin and she is a Physical Therapist. She asked if she could work with Drake in between their treatments, and we think they are both benefiting. Drake really enjoys working with her and he doesn't fuss at all.

Some exciting news...Drake completed 2 of his bottles today! Yea! Also, I introduced Kennedy to a sippy cup. Since she is an "I can do it myself" kind of a girl, she loves it!

Tomorrow Drake will have two more sessions. Then he, Kennedy and I will head home to spend Saturday Night and Sunday with Daddy. Then Monday will find us on the road again to Gran & Poppy's very early so we can start the new week and our treatments again.














Tuesday, March 19, 2013

A New Day

We started hyperbaric oxygen therapy Monday and are having two treatments per day. Drake is doing amazing! He had 2 treatments Monday, and today they moved him to the maximum level, as he was doing so great. His ears are monitored to be sure there is no damage to the eardrum.

Monday, we had to go from the hyperbaric treatment to the cranial doctor for measurements. Gran brought Kennedy to join us for an evaluation. It was determined that she, too, would have a helmet. Hers will be for 8-10 weeks, and Drake's will be for about 4 months. The technician put a stocking over Drake's head and face, and he could not stand it. It took 4 people to hold him down, and no one could believe how strong this little guy actually was. It was a very long day for all of us, and they were not able to get the images they needed. This as difficult for not only me but also Drake's nurse and Kennedy. Kennedy did not like seeing her brother upset.

Today Drake had 2 more treatments. Then we had to return to the cranial doctor. This time the stocking had to go over his head only and had an opening for his face. This is not how things are usually done, but they are trying to make it work for Drake. He still was not happy, but it wasn't as bad as yesterday. He has been awake all day, and right now, we are trying to get him to sleep. We know he is exhausted. We hope to be home earlier tomorrow in order to have a shorter day!

Kennedy has been hanging out with Gran. This will be the regular routine--Drake and me at the hyperbaric doctor while Kennedy & Gran are at Gran & Poppy's. She continues to do great. She is working on sitting alone. She is actually doing quite well. Before too long, she will have it mastered.

Our weekends will become even shorter starting this week. Drake has treatments Monday-Saturday, so we will not be going back to Tyler until after noon then. Daddy will be home with his regular schedule, so he will have to spend Friday night at home without us. We will be leaving super early on Monday, just like Daddy, so we can be back in McKinney to drop Kennedy off and get on to Drake's appointment.

Life continues to be an adventure, but each day is so special when we see their adorable faces. It makes it all worthwhile. We feel that God continues to hold them in the palm of His hand as He guides Brian and me through our decisions.














Saturday, March 16, 2013

Easter Pictures

This has been a very different week, the babies and I spent the week at my parents. We had planned to have a picture session with my nephew for Easter Pictures. Three little babies, one photographer, and several crazy women trying to keep the peace.

We met about 11:00 at my sister's house. We had two outfits per baby. The photographer, a friend, started the session with individual pictures of each baby in just their diapers. She put pearls on our baby girl and some bunny ears, and off we went! We also had coordinating outfits for the kids, Easter Eggs, etc. Ironically, Gran had ordered Easter Baskets for each baby, but they arrived a few hours after the session!! Oh, well. We should have had someone with a video camera on the adults! We are always willing to try anything to get our little ones to smile or look the right way...no matter how silly we look.

The pictures went amazingly well. We were very pleased and have pictures to treasure always. Our babies first Easter will be here in a few weeks, and the pictures are ready. By next year, it may be even more of a challenge--they will all be on the move!

It was a great week, Daddy is home and so are we. Next week brings the beginning of the hyperbaric treatments for Drake. We have optimistic hopes and we can't wait to see how things go. Please keep him in your prayers, as well as the doctor and technicians working with our little man.

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