Pool, Friends, and Family

Hello all!

So a couple updates.

Caleb is amazing...have I said that before?!?! HA HA He is such a tough little guy.

First updates on some therapy:
So I am able to get Caleb to eat almost a half a jar at least once a day. It is not easy though. He is very timid when I bring the spoon to his mouth for the first couple bites. Then finally he seems to get into a rhythm and wants to eat! So I hope that that continues!

Walking: well I decided the other day to take Caleb outside to see if that would help in anyway with his distaste for his walking therapy. I put him on the sidewalk and held his hands and low and behold he started walking and far. He walked down to the end of our street and back and not just once a couple times. I was amazed. One of the cutest moment of the walk is when our friends who love Caleb just as much as we do drove by they would all say 'Good job Caleb' or 'You can do it!" So sweet! It is so wonderful to continually be surrounded by such wonderful people and friends.

Pool
Well Caleb had his first dip in the pool the other day and he loved it. The first day we tried it didn't go so well and he did not want to get it. So I tried the next day and he loved it. He also loves his daddy's hat more than his. So, I think we are going to have to get Brian a new hat!


Friends
Brian and I had the chance to go out last week and be surrounded by some more sweet and wonderful friends of ours. We all went to a local restaurant to have dinner, drinks, play pool, and watch the Penguins. We had so much fun! Thank guys it was so great to see you again. Hopefully, it won't be such a long span in between visits next time.
Family
So Brian and I have decided that we are going to start trying to do some 'normal' things, leaving the house when safe and doing things with Caleb, without putting Caleb at risk. So we tried a picnic! I took Caleb to my Mom and Dad's house on Memorial Day (Unfortunately Brian had to work so he couldn't go) so he could finally be around all his cousins and Aunts and Uncles. Caleb has not seen any of them since he was first born. So this was an awesome day for us! Truly amazing. It was so cute to see how Caleb watched his cousins Hunter, Casey, and Sam play with one another. They were so great too at maintaining a safe distance from Caleb! Thanks guys! AHHH to be with my whole family....my parents, my grandma, my brothers and their wives, and my niece and nephews....wow words can't describe. I love you all so very much and have missed being a 'part' of the family. I am so glad that we did it and thank you all for being so great regarding Caleb's safety. Next time, I will try to relax more! I cannot wait for the day when I get pictures of you all holding Caleb and being right next to him.

Photo and video editing at www.OneTrueMedia.com

Come on bloodwork show good results so we can do more 'normal' things!

Thank you all for checking in on us!!

God Bless you all!!

God Bless Caleb!!

Come on Immune System....WORK PLEASE

Okay well today the fourth set of blood work was taken to test Caleb's immune system.

This round of bloodwork was taken in a little different manner than in the past. In the past, Caleb had a central line (a IV line that is more permanent than the general IV you would get for a short admission in the hospital) and I would draw the blood and then my dad would drive to Children's Hospital in Pittsburgh where it then would be shipped off to Duke. Well, as you all remember Caleb's central line was removed awhile ago so we had to make plans this time for Caleb to get his blood drawn and to make it even more 'new' for us we were going to try to get it drawn at our local hospital where they are not familiar with our little 'bubble boy' Caleb. This was very nerve-wracking for me for many reasons this morning. One, I know Caleb has pretty much no veins left for them to draw from as all his veins have been damaged from all the IV's and sticks he has endured through his lengthy hospital stays and two, that this hospital is not familiar with our immuno-suppressed little man and I am not sure how they were going to be regarding the isolation precautions and accommodating to our special situation. I am happy to report that both my apprehensions were put at ease. From the point of registration to the time we left, the personnel were fantastic and accommodating to our needs. Of course, we were starred at by other patrons because Caleb is kept under a rain cover in his stroller to protect him. He doesn't tolerate wearing a mask anymore, he actually rips it off. But once again, the staff was superb. My dad went with me, as Brian had to work, and he was the 'dirty/contaminated' person, so he handled all the paperwork and signing of papers so I can hold Caleb and tend to his needs. After we registered, Dad went and asked if we could wait outside until they were ready to take Caleb's blood. They were fantastic, they came and got us and took us directly back into a room when they were ready. The techs were amazing. They got blood from Caleb on the first stick and wore all the proper gear (masks, gowns, and gloves). If anyone reads this who knows anyone at Wheeling Hospital, please spread the word on how much I appreciate how fantastic they were to Caleb and accommodating to his situation.
So my dad is on his way to Children's Hospital in Pittsburgh to drop of the blood were it will then be packaged and shipped to Duke. Thanks Dad for all your help today, you were a HUGE help. I love you!
We are praying really really really hard that the bloodwork shows his T-cells are functioning and his immune system is functioning at a level at which maybe we could do some 'normal' activities with Caleb and have some confidence in his ability to fight off bugs and viruses! Now the waiting game begins....one long month of waiting...come on immune system please work!

God Bless you all!!

God Bless Caleb!!

Growing Lil' Boy

Well the title of this post says it all! Our little boy is growing up. So many updates:

Well where do I start...

Clinic Appointments:
Caleb finally got to see some of his doctors at Children's Hospital in Pittsburgh for much needed clinic appointments. Once again, we try to wait until the end of cold and flu season to hopefully limit the possibility of exposing him to nasty bugs. Yes, bugs and viruses will always be around, but if we can take him when the threat is a little less that is better for him. We got to see the new Children's Hospital. When we were driving into the parking garage, Brian and I gave Caleb a little speech and told him we didn't want any overnight stays at this hospital, just clinic appointments. The hospital is gorgeous. I am just really hoping we never see an inpatient room, we have seen enough hospital rooms.

So the first doctor we saw was Dr. Frangiskakis, pictured at right with Caleb. This is Caleb's acting Pediatrician. She has watched over Caleb from his first admission to CHP until now. She was so happy to see him. She said he didn't look like a baby anymore, that he looks like a little boy. We went through his development with her and the big discussion was his feeding orally or the lack thereof. She, Brian, and myself agreed that if Caleb does not improve with his feeding by the next time the immune tests come back, with hopefully good results, that we are going to do an in patient feeding clinic with him. The rest of the appointment went well. We noticed an ear infection which he was put on drops for. The unfortunate news is that Dr. Frangiskakis is leaving CHP to go back to her home state. We will miss her so much, she was so wonderful to Caleb and our family. We stayed with Dr. Frangiskakis as his PCP as she was acting as his 'quarterback doctor' - she kept all his specialist docs in Pittsburgh involved and updated as well as communicated with Duke. However, there is no time like the present to get Caleb back to his primary PCP here in Wheeling. We are ecstatic as this is such a big milestone for Caleb.

The next following week we saw was the Cardiologist. They haven't seen Caleb since before he went to Duke. The original plan that the CHP Cardiologists would do his open-heart surgery to fix his ASD's and his Triatrium when we got home from Duke. But that plan changed, as you all know, when Caleb went into heart failure when he was very sick at Duke. So, Brian and I were expecting a very long appointment. Brian and I were both very nervous about this appointment as Caleb has been having some lower heart rates. Surprisingly, they did an EKG and listened to him and they said that based upon what they heard they did not believe the risk of doing an ECHO, because of his immunosuppression and what he may be exposed to, was needed because they said he sounded great. The doctor indicated the lower heart rate is what a 'normal' heart should do. Yes his may be lower than others, but as long as he is perfusing well (blood is circulating well into his extremities) and he is not changing colors or passing out then it is all good. Then the bigger news, we don't have to see Cardiology for a YEAR! We were in shock. Really....we were expecting to be handed slips of this test and that test and to come back in two weeks. But nope, we don't have to see them for a year. Way to go Caleb!

So since we had some extra time, we thought we would stop by and see our friends at Cleft-Craniofacial to say hello! They were always so great to all of us. We were shocked when they said to go ahead and bring Caleb in and they would just go ahead and see him to (he was scheduled for a clinic appointment for the end of June). They are so great, they know how far away we live so they slid him into their schedule to see him for his repair check-up. His plastic surgeon, Dr. Losee, said Caleb's scar looks great. We asked him about a white spot on Caleb's gum-line. Dr. Losee indicated that is the scar from the palate repair and not to worry. He said the repair looked good and by what Caleb is trying to verbalize now he believes the palate repair will work well in regards to speech! WOOHOO What a day!

Feeding Update: I realized the other day that the current approach to feeding wasn't working. So I tried another approach and I am so very happy to report that I am able to get Caleb to eat about a half a jar of feed about twice a day. Never thought that day would happen. The bigger shocker was one night when I was feeding him at dinner, he looked thirsty, so I handed him a sippy cup, and he DRANK FROM IT! Brian and I were ecstatic to say the least. I hope that Caleb continues to feed well. The first bite always seems to be the toughest, but then he does better with every bite after that.

Girls Day:
I finally, after three long years, got to spend some quality time with my two great friends Jen Straub (white shirt) and Jess Tuschong (white and brown shirt). Most of you are familiar with these two blessings also. As Jen sends out email updates on Caleb and has updated this blog for me when I couldn't. Jess, created the page about Caleb on Facebook which kept hundreds of people updated also. These two girls have been awesome to Brian, Caleb, and myself throughout the years. They have done so much for us and they continue to do so. I was pampered by the two of them by a manicure and pedicure and lunch! It was so nice to see them. When we were hugging to say goodbye I didn't want to let them go. I love you both so very much thank you for a wonderful day! I had such a great time.

The following week, I was pampered by another friend, Alana, and got my hair done. Thanks Alana it looks great!

I love you girls! Thanks for the pampering it was so nice! Love you!


Zoo:
Okay so are you ready for the biggest update?!? Brian and I last week had enough of being shut-in and decided to take Caleb to the Oglebay Zoo. We were hoping that there wouldn't be many kids there as it was still pretty early in the summer and we lucked out. There was noone there. We were able to take the cover off the stroller, that we usually use to keep him in a 'bubble'. It was so much fun. When we walked out into the zoo. I almost broke down. But I held it together. We had the zoo to ourselves and it was probably the best time we have had in years. A highlight of the visit was we stopped at the concession stand to get a drink (which is a big step too because even this is a germ exposure possibility, but we wiped everything down) and the lady that was working the concession stand asked how old Caleb was and we told her almost three then she said 'what a healthy looking three year old'. She had no idea what those words meant, wow our child looked healthy! The only part of the zoo, we really couldn't do was the train ride, as there is no way to make that a 'clean/contamination free' experience. But we had a blast. We wanna go back, but we know that we lucked out that it was not that crowded. It would be nice if we could do more things like that for him. What a day! So much fun! We didn't want to come back home!

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Thanks for checking in on us, sorry for the delay in posts, as you can see we have been very busy!
God Bless you all!!

God Bless Caleb!!

Meetings, Meetings, Meetings

Well we have had a lot of meetings lately.

Thursday I had a conference call early in the morning with Birth To Three and Ohio County Schools discussing the transition from Birth to Three into the Ohio County School System. They have agreed to provide a home bound teacher for whatever services that they deem necessary when they come in to do his testing in June.

The next meeting was for a psych evaluation, as it is needed for us to apply for federal assistance called Waiver for Caleb. Waiver, is a very hard system to get into. Just like any other assistance for special needs kiddos, the paper work is ridiculous and has to come from many different people. There is usually a waiting list and specific criteria that have to be met. The psychologist came to the home on Thursday, and in her opinion, she believes Caleb should qualify for Waiver. Now we will just have to wait to see if the State agrees.

Last and definitely not least was our meeting with Make-A-Wish Foundation. The lady that came to the home was so nice. So we went for it, we asked for the foreclosed house next door to be torn down so we can have a yard for him, get him outside so he is not in the house all the time, and put different 'therapy stations' in our yard over time for him. She really wasn't sure if they would go for this and asked us if we had a second wish, just in case. We couldn't think of one....it is so hard to pick a wish for a child that can't leave the home. So she said she was going to ask the 'higher ups' and get back to us! So we will see! I will keep you all updated.

Thanks for checking in on us!!

God Bless you all!!

God Bless Caleb!!

All I can say is 'Wow'

Well I was speechless the other day and once again was amazed and so proud of my little boy.

I was eating some popcorn and as always, I let Caleb touch the food I am eating if he wants. So he did. Then what happened next was amazing. So when I was eating my popcorn, Caleb stuck his hands in the bowl and grabbed some. That alone was a feat in itself as it is a very weird texture and the fact that he was even touching it was great. He then held a piece in his hand, crawled to Saba, and threw it to her. But wait it gets better. He did the same thing a couple times, and then....he looked at me, as by this time I was standing up with the bowl in hand, said 'aba (which is Saba our wonderful dog), then signed 'eat' (assisted with the verbal noise of eating) and then signed 'more'. I wondered if he was trying to let me know he wanted to give Saba more to eat. So, I leaned down and sure enough he put his hand in the bowl and then went over and fed her! I couldn't believe it! My baby just signed a sentence to me telling me what he wanted! So awesome!

Way to go my lil' man. We are so proud of you. You are amazing!

Thank you all for checking in on us again and for enjoying moments like these with us!

God Bless you all!!

God Bless Caleb!!

Meetings, Walker, and a New Trick

Meetings
Our meeting with Birth To Three: we set new goals and discussed the need for an educator to start coming in from Ohio County Schools when Caleb is of pre-school age and transitions out of Birth To Three. First the goals were reviewed as this is a main part of Birth to Three. The therapists set goals with the parents of what you hope can be covered over a certain amount of time. Ours didn't change much, but there were slight improvements. We did make some strides since our last set of goals. He now tolerates a plate of food in his area and he is now crawling! So those milestones may seem small but they are big strides for him. Some of our new goals were: 1. to get Caleb to willingly accept food and drink in his mouth. 2. to be able to communicate better-continue to build his verbal and nonverbal communication skills 3. to try to get Caleb to go up and down steps 4. to try to get Caleb to walk, using whatever equipment (i.e. a walker) that is necessary. The goals are there fore the parents to, if needed, ask the therapists what they suggest to do to try to achieve those goals. So I pray that we can do what we can to get him to start achieve if not achieve those goals.
Our meeting with Make a Wish Foundation: Unfortunately, this meeting had to be re-scheduled. We were really bummed! The representative called about an hour before the meeting and said she had to re-schedule. So we are now on for the 23rd. I did research the possibility of a sensory room for Caleb. It does seem like a great idea for kiddos with sensory issues. But I think, and Caleb's therapist also agree, that this would be way to much for Caleb and scary for him as his sensory issues are pretty bad. So I think we are going to, thanks to a lot of our friends encouraging us to try, ask to see if they would be willing to tear down the foreclosed house next door. We do not have much of a yard and since Caleb is not able to leave the home due to his isolation precautions, we though the yard would be the best thing for him. He could get outside and do different activities. Our goal would be to put sensory 'stations' in our yard. I would also like to see if we could get the yard fenced in as we live on a very busy street and Caleb is deaf in one ear and has significant hearing loss in the other ear. So for safety reasons, that would be awesome. I am not sure if they will go for this or not, but it is so worth a shot. This would be awesome for him if we could get him out of this house when the weather is warmer and get him to play, but be doing therapy at the same time. We will see! I am really really praying they grant that as his wish!
Walker
Caleb's PT was able to come yesterday and he modified Caleb's walker. Caleb seemed to be a little more accepting of the modifications and not so scared of it from a sensory perspective. But as we have seen before, he can become scared very quickly. So I am trying to think of ways to decorate the walker to make it less 'scary' from a sensory perspective for him. I hope to updating soon that he is using it and loving it. Fingers crossed! We still also aren't sure if this is the best walker for Caleb! There are many walkers, so we are going to try this one a little longer and if it doesn't work, we will try a different one.
New Trick:
We put Caleb on the stairs yesterday to see what he would do. Well, for those of you who saw the post regarding the big boy bed, one of his MANY sensory issues effected his 'touching' the bed. Same happened with the stairs. We placed him on the steps to see if he would crawl up the steps. He could not stand his belly touching the stairs. He flipped! He shut his eyes and cried. So we turned him around and let him sit on the step. Then we helped him go into a standing position a few times from the sitting position as we are trying to teach Caleb how to squat also and this exercise will build those muscles. He did great, he required little help to get to the standing position. Then later on that day, I was so excited, I took him back to the steps to see if he would do it again and he did. Then....he was getting so excited about it...he did it on his own! It was awesome!

Thank you all for checking in on us again!!

God Bless you all!!

God Bless Caleb!!

Easter

Here are some Easter pics. We had a very nice day!

The Easter Bunny even stopped by our house a couple days early so Caleb could see him through the window! Caleb didn't really know what to make of it as he really has never seen anything like that before as we haven't ever been able to take him to get pictures taken with Santa or the Easter bunny, so needless to say for a child that is a shut-in and in isolation precautions it was definitely something new, but so so neat for him to see and experience.

The piece of paper with eggs colored on it was going to be how I thought we could try to communicate with Caleb on the fact that he has to hunt for Easter Eggs. But he decided to get up really early Easter morning and when it was time to hunt for eggs he wasn't in a good mood at all so we decided to forgo the Egg Hunt. Maybe next year...

He got a lot of wonderful gifts from the Easter Bunny and his grandparents...cars, trucks, paints, books, DVDs, etc. He also got some candy, which I hope he tries to eat just a little bit of it...We will see!

We are also anxiously awaiting our busy day tomorrow. Tomorrow we meet with Birth to Three to discuss his transitioning out of their program and we will see what he will need as far as care to continue his therapy. Also, we have our meeting with Make a Wish...and we still don't have a wish! Yikes!

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I will post as soon as I can to update everyone on the meetings!

God Bless you all!!

God Bless Caleb!!

Make a Wish!!

Great News! I just get off the phone with the Make a Wish Foundation and they are going to grant Caleb a wish. This is so exciting. We had thought about doing this while Caleb was at Duke for his transplant, but honestly, he was so sick and fighting for his life that it wasn't the best time. We finally filled out the beginning paperwork a couple weeks ago and I got a call this morning letting us know that he has been approved and can MAKE A WISH! We are so thrilled. If anybody deserves it this little boy does! We still aren't sure what his wish will be as Caleb can't verbalize a wish, so that it a lot of pressure on Brian and I that we pick the right wish. Our meeting with Make A Wish is next Tuesday, so I will keep you all updated on the progress and if we come up with a wish....

God Bless you all!!

God Bless Caleb!!

Signing, Hearing, and Transition

Well Caleb continues to pick up more signs! I introduced 'where' to Caleb and he picked it up within 10 minutes. Which is so much fun, because I can now sign and ask him questions....and he understands, as long as you keep the questions very short. For example, we sign 'where's duck?' or 'where's dog?' and he finds them. He also continues to recognize an actual letter, from his letter toys during bathtime, while he's in the tub and associates those letters with certain things. For example lastnight he found an 'L' and growled like a lion. I also have a habit if there are two of the same letter I would place one above the other on the side of the tub. I caught him lastnight doing that exact thing! So amazing!
We have noticed that the words in which he does verbalize, the first letter of each word is missing. I asked his speech therapist about this yesterday and she indicated that this is very common among children with hearing impairments. So we are really trying to over-enunciate the first letter/sound of every word to help him hear it. I am also trying to get him to pay more attention to my lips, so maybe he can get better at lip-reading.
Caleb is also almost three which means he will soon be transitioning out of the Birth To Three program, which is all his therapy, and will enter into coverage/services provided by the Ohio County Schools. We are scheduling a conference call with Ohio County Schools to see what we need to get done to get him those services.
So lots going on. I am also planning to schedule his plethora of needed clinic visits. Soooo many docs he needs to see, should be about 2-3 days of clinic visits. I am hoping to get them all planned after cold/flue season is over.
Well, I have to go feed lil' man!

God Bless you all!!

God Bless Caleb!!

Continuing to Sign and a Date Night

Caleb continues to amaze me with how quick he is picking up signing. He signed 'dog' the other day, which is probably one of the hardest signs to date. He really loves signing. He will sit on the floor in front of me and sign a whole bunch of different words and wait for me to say what he is signing. It's our new game. I have thought of a couple ideas of some possible things I could make at home to help him start learning even more cognitively-so I will post pictures soon of that once I get them made.

He also is getting a lot better with crawling, seems a lot more coordinated! AND FAST!

I had posted awhile back that I would post the story done on our local news station. Well the cd I got with the story on it consists of numerous files and not just one file, so a friend of ours Crissy Clutter, is working on getting it put into one file. She is very busy right now, so she let me know today that she hopes to have it for us sometime after Easter. Thanks Crissy!

Brian and I were able to go out for the first night in a VERY LONG time the other night. We had sooooo much fun. It was so nice to have a date night. My mom and dad babysat and did great and had so much fun they encouraged us to go out again soon. Brian and I might take them up on that offer and go out for our anniversary this coming Monday. I had a blast Brian, I love you very much!


I also would like to thank everyone for the prayers for my Mom when she was in the hospital. She is home now, her sugar is stabilizing. Thank you all for your prayers!

God Bless you all!!

God Bless Caleb!!