HBOT

On Monday we went to Dallas for our consultation about HBOT (Hyperbaric Oxygen Therapy). We were pleased to find out that Drake is a good candidate and could possibly benefit from the treatments. A fear with babies is the pressure on their eardrums. We did a trial run to see how he handled it. If there was a problem, he would need to get tubes put in his ears before we proceeded with further treatments. Luckily, Drake did very well! In fact, he seemed really comfortable inside the chamber. He watched a little Baby Shakespeare and even took a little nap. I couldn't get over how grown up he looked while he was inside. His nurse and I stood next to the chamber and watched him diligently for signs of distress. I really like that it has a walkie-talkie attached to the side so that we can talk to him during the treatments. Each treatment lasts for 1 hour, and he is scheduled to begin 40 hours of treatment beginning on Monday. He will have 2 treatments per day, several hours apart,
6 days a week for 3 weeks. This will be followed by 6 weeks off. Then we can repeat the entire procedure. We are cautiously optimistic about the treatment. He seems much more active, puts his hands on his face and in his mouth, and he has never done either of these, like Kennedy does on a constant basis.

From there, we headed to the cranial doctor for measurements. He will be receiving a doc-band helmet to aid in reshaping his little head. We know he will hate it, but we were excited to hear that he may only have to wear it for about 4 months.

Then we headed back to the first doctor for a few allergy tests. A 9 year old was there for the same thing and was crying almost inconsolably. In came tiny little Drake. Our little man took the testing like a trooper. Everyone was amazed, and the older boy stopped crying about his, not to be outdone by a baby!

Today has been a little R&R; we have hung out at Gran & Poppy's and rested for tomorrow's photo shoot. This should be quite an experience, as it will be Drake, Kennedy & their cousin, Jacob.

We have enjoyed FaceTime with Daddy this week, and we are anxious for him to come home on Friday. It will be nice to be home as a family for the weekend!

So Much To Report...

Wow! This has been such a busy week full of fun and hope on the horizon. Drake's visit to the pulmonologist on Wednesday was wonderful! He said that Drake looks great and his lungs sound clear. He is very pleased with his progress. We are now able to slowly wean him off of the oxygen a little each day. After he turns one, we will go in for a sleep study to ensure he isn't having any apnea episodes during the night before he can be completely weaned off.

Now, onto today's big milestone...drumroll please...Drake rolled over!!!! Mostly it was to get away from Kennedy who was grabbing his ear and trying to put his hand in her mouth, but hey, we will take it. Drake's nurse and I were making so much noise encouraging him to go all the way, that Brian came in from working in his home office to see what was going on. Such a special moment and I am thrilled Brian was able to witness this, too! Way to go Drake!

Monday will be a very busy day for our little man. He has an appointment we are eagerly anticipating...an evaluation for Hyperbaric Oxygen Therapy. We have been researching this for several months now and have discussed it with several of his doctors at our recent visits. All seem in favor of the treatment and feel there is a good chance it will result in some favorable improvement in his condition. It is still considered experimental and that is why we were a bit apprehensive at first, but all of his specialist believe it will not hurt him and it may help him. Whether it does help or not, as long as it won't hurt him, we are glad to try anything available.

Midday Monday we have an appointment for Drake to be measured for a doc-band helmet which will be beneficial in reshaping his little head. We know this will be a major adjustment for him, and we can already picture him shaking his head from side to side trying to get it off. Once again, we must remember that it isn't forever, and the end result will be well worth it.

Drake's feeds continue to be increased, and he continues to increase the amount he takes by mouth, as well. All of this shows steady growth and improvement which makes us happy.

Now that I have gone on and on about Drake, I will tell you about his sweet sister. She puts everything in her mouth now--her toys, her hands, our fingers, etc. She is one busy little girl, constantly moving around and watching everything going on around her. The pulmonologist ask me if we were seeing Drake's personality beginning to show more. My response was a Yes, but that his sister has enough personality for both of them. Kennedy also loves to eat. Her bottles continue to be increased in volume, too. She also enjoys her cereal with fruit once a day and tries to take the spoon away every time.

Wednesday of this week, we plan to make Easter pictures along with their cousin, Jacob. They may not be able to attend Easter Services, but they can still have new outfits and Easter Baskets!! If all goes well, we should have some great pictures to share later in the month.

***in the picture with four quadrants, the top two pictures are from the end of November and the bottom two pictures are recent. Boy have they changed!

Doctor's Visits

Every week brings new adventures and more visits to various physicians. Today was a local trip to the pediatrician for their monthly Synagis Shot. Thankfully, next month will be the last one until next fall. It is always so hard to see them get this medication.

Their monthly weigh in went well. Drake was 13 pounds .05 ounces, and Kennedy was 13 pounds even! Wow, brother has taken a slight lead!! This is wonderful, as they should be gaining about 1 pound per month.

Tomorrow, Drake and I will be traveling back to Dallas with our nurse to see the pulmonologist. This always makes for a long day. We are hoping the doctor will feel Drake is ready to begin weaning the oxygen. Drake is definitely ready to be finished with the cannula because he manages to remove it from his face quite often. It will also be nice when we can move around the house with him without being tethered to a tube. Kennedy and Gran will hang out for another girls day tomorrow while we are gone. It is always interesting to hear how Kennedy handles having Drake and me away for part of the day.

Moving Forward

Our neurology visit this week was a rough day. It's hard to relive his medical history, diagnosis and expected limitations over and over again. I hate hearing all of the things he will most likely never be able to do. We just want the very best quality of life that he can possibly have and that is what we are working toward. I do really like this neurologist and we are going to stick with him. Our next visit will be in 4 months.

The Neurologist wants us to continue with the therapies we are using, and only time will tell what he will be able to accomplish. He even discussed some alternative therapies that we have been researching. More information to come on these soon.

The following day we had a cranial evaluation at Medical City. I really liked the doctor that we met with for his evaluation. While Drake's head shape is not as severe as even some full term babies, his situation does not allow us the quick "fix" with positional changes. Due to this, it is considered a medical necessity and we will be going to cranial technologies next Monday for measurements and a fitting.

So for now, we continue moving forward and create a healthy and happy life for our precious son.

Kennedy is continuing to do above and beyond what is expected. She is the light of our life who makes us laugh and smile every single day. She cracks us up! We began playing a game "peek-a-boo" where we put a small rag on her face and ask "where is Kennedy?" She quickly figured out to reach up and remove the lovie. We play the same game with Drake and while he does not pull it off with his hand, he does move his head back and forth to remove it. While playing this with Drake, Kennedy reached over and removed his lovie when we said, "where is Drake?" Love that girl!

Travels

We are currently staying at Gran and Poppy's for these upcoming doctor visits. This way little Miss Kennedy has a babysitter while Drake and I are gone to the doctor visits. Tomorrow is the neurologist and Thursday will be the cranial evaluation. By the end of this week, we will all be ready to reunite at home with Daddy.

Today I was able to get out for a lunch with some very special friends from Presby. They came by my parents house to visit with the babies and marveled at their development post discharge.

Both Drake and Kennedy's congestion has improved greatly! We are still doing breathing treatments on Drake, but I am just glad to see him improving. Boy does Kennedy act different away from home! She is so afraid she is going to miss something, that she is absolutely fighting every nap possible. This is going to make for quite a challenge for Gran the next two days as we are gone with Drake to appointments.

Oh, Mr Drake... We have been working with him on using his hands and grasping toys. He seems to have taken that and run with it...last night he disconnected his feeding tube. Luckily I woke up during the night and was able to reconnect it before he lost too many calories, but not before it made quite a mess on the floor.

Drake's dietitian through ECI came out this weekend. In the past three weeks since her last visit, he has grown a full inch and almost one pound! Way to go Drake! I hope and pray to have good news to report on Friday.

 

8 Months Old!

Tomorrow is February 23rd and that means our little angels will be 8 months old! Wow! The months seem to be flying by really quickly! Drake's nurse and I weighed them today and they were within a 1/2 ounce of each other...Kennedy was 12# 6oz and Drake was 12# 5.5oz. Both Drake and Kennedy are still battling congestion, but it does seem to be improving. Drake is still on breathing treatments every 4 hours and we will continue those until he is cleared by his pediatrician.

Due to severe weather on Thursday, I rescheduled Drake's cranial evaluation for next Thursday. I just did not feel comfortable driving to Dallas in a storm with such precious cargo. Next week will be a big week for Drake; he has an appointment with a neurologist on Wednesday and then his cranial evaluation on Thursday. After my last meeting with a neurologist, I am a bit apprehensive about meeting with another one. I am praying this meeting will go well and that this doctor will look at Drake "the patient" and not just Drake "the MRI scan."

My, oh my, Drake has had a great few days! Drake's nurse got him an exercise ball as the Occupational Therapist had suggested, and this has really helped with his head and neck control exercises. We also broke the rules (don't tell the developmental doctor) and let him try rice cereal with a spoon. He was only interested in a few bites, but it was amazing to see him open his mouth and actually take a few bites. It just didn't seem fair for Kennedy to have all of the fun. We started playing a game of "peek-a-boo" with Drake where we cover his face with a lovie or small blanket and we talk to him and encourage him to get it off. This was suggested by his Social Skills Therapist who comes to visit every other week. He isn't using his hands to remove it yet, but he has figured out that moving his head back and forth will remove it.

Kennedy has really been doing well with her sitting exercises. She still can't stay up for very long on her own, but she can stay up longer than last week and she is developing more control. Kennedy figured out the "Peek-a-boo" game really quickly and she enjoys playing. She pulls the lovie off of her face when we say, "Where's Kennedy?" and then she laughs and giggles. In the mornings when she wakes up, she is quite the talker. I told Brian she must be telling me all about her dreams during the night.

It's hard to believe we have 8 months behind us already and 3 of those months have actually been in our house. I can't wait to see what they learn and discover between now and month 9!