Hello everyone! Wow, I can't believe it is February already. As some of you know it's my birthday month so I REALLY love February. My cousin's son was born on the day before my birthday and he is the boy's age so we are really look forward to Caleb's birthday party on my birthday weekend. My cousins are having Caleb's birthday party at the Glenrose Dinosaur Park so I know the boys will be so excited to go there and check out the dinos and they really love to hangout with their cousin Caleb!! They have a new show they like called Dino Dan, which totally gets on my nerves, but Randy and the boys watch it. That's a Daddy's time show ;-). Josh (Ashley's boyfriend) also got the boys the Toy Story dinosaur Rex for Christmas, so I think they will really think the Dino Park is pretty cool!!
So what have we been up to?? As Randy likes to say, "our lives of sleeping in have changed forever" because Preston started school after Christmas break. We still hit snooze repeatedly until it is 7 and then make a mad dash to get out the door so we don't have to take Preston in and sign him in as tardy. We have had to do it a few times, but I think we made it the first two weeks without having to - impressive if you ask me.
So what have we been up to?? As Randy likes to say, "our lives of sleeping in have changed forever" because Preston started school after Christmas break. We still hit snooze repeatedly until it is 7 and then make a mad dash to get out the door so we don't have to take Preston in and sign him in as tardy. We have had to do it a few times, but I think we made it the first two weeks without having to - impressive if you ask me.
Are we seriously waking up this early?? Preston's first day of school.
Preston's school is going even better than we expected! His teacher is so incredibly nice and caring. I really hoped he would have a caring, thoughtful teacher and he got that for sure in Ms. Newman. She came up to Randy and I after Preston's ARD meeting before Christmas and told us that she understands how difficult ARD meetings can be (I had a minor breakdown when some difficult topics where brought up). She mentioned that she has a son with autism and she introduced us to him in her classroom. Her son was home sick from school that day so Ms. Newman had had to stay home with him, but she came in afterschool just for Preston's ARD.
I was really impressed she still came in for the meeting and it felt very good that she opened up to us about her son. It was so comforting that she knew first hand how hard it was to be on the parent's side of all this ARD meeting and IEP stuff. So many things had to come together for us to be able to move at the end of this past summer. After that ARD meeting I really felt a peace that we were exactly where God wanted us to be for Preston. I know Randy did too. We were really blown away by the school, the administration, the therapists and the teachers.
As for Preston's progress, we feel that school has already started to make a difference in his confidence with speaking. Preston has many, many words - most of which he repeats after you say them or says them when you point to a picture. They just don't come out all the time spontaneously and he still struggles to find them when he is frustrated or wants something. We feel like that is very slowly starting to change though. Preston will now pretty reliable say drink when he sees a drink he wants and he will say hi and bye sometimes without being prompted. He can also say a lot more things, it's just really hard to get it out unless HE wants to say it. This weekend Stephanie and MiC were in town and when we were leaving to go somewhere and Baby Caroline wasn't going with us, Preston said "bye, bye Baby Caroline." We were sooo proud of him. He can look at a picture and say Baby Caroline if feels like it or gets excited, but saying it in the moment when we were leaving her was a great thing to hear.
At school they are also working a lot on his following directions and social appropriateness, such as staying seated when it is time to sit and participating in group activities. We have seen improvement in this since school started and that has been so exciting as well. His OT, Ashley, at Our Children's House noticed this as well and she was so ecstatic about it. She is no longer having to sit him in a therapy type chair (one with a tray to keep him somewhat confined). She is just sitting at a table with him and he is listening to her when she tells him to stay seated! Ashley is just so cute and she gets more excited than I do sometimes when he does new things. She is such an awesome therapist and person!!
I was really impressed she still came in for the meeting and it felt very good that she opened up to us about her son. It was so comforting that she knew first hand how hard it was to be on the parent's side of all this ARD meeting and IEP stuff. So many things had to come together for us to be able to move at the end of this past summer. After that ARD meeting I really felt a peace that we were exactly where God wanted us to be for Preston. I know Randy did too. We were really blown away by the school, the administration, the therapists and the teachers.
As for Preston's progress, we feel that school has already started to make a difference in his confidence with speaking. Preston has many, many words - most of which he repeats after you say them or says them when you point to a picture. They just don't come out all the time spontaneously and he still struggles to find them when he is frustrated or wants something. We feel like that is very slowly starting to change though. Preston will now pretty reliable say drink when he sees a drink he wants and he will say hi and bye sometimes without being prompted. He can also say a lot more things, it's just really hard to get it out unless HE wants to say it. This weekend Stephanie and MiC were in town and when we were leaving to go somewhere and Baby Caroline wasn't going with us, Preston said "bye, bye Baby Caroline." We were sooo proud of him. He can look at a picture and say Baby Caroline if feels like it or gets excited, but saying it in the moment when we were leaving her was a great thing to hear.
At school they are also working a lot on his following directions and social appropriateness, such as staying seated when it is time to sit and participating in group activities. We have seen improvement in this since school started and that has been so exciting as well. His OT, Ashley, at Our Children's House noticed this as well and she was so ecstatic about it. She is no longer having to sit him in a therapy type chair (one with a tray to keep him somewhat confined). She is just sitting at a table with him and he is listening to her when she tells him to stay seated! Ashley is just so cute and she gets more excited than I do sometimes when he does new things. She is such an awesome therapist and person!!
The boys had so much fun playing in the leaves at the begining of December.
As for Preston's progress with eating that is about the same. We have had to cut back on our OCH therapy visits so that our insurance covered visits will last the entire year. We are actually really up in the air as to what to do now. There are out-of-state options we may consider, but at this point we just really need a break from the outrageous medical bills so we are going to have to put an out-of-state option on the back burner for this year. There is a place called the Callier Center here in Dallas, and two different people have told me great things about it.
The fact still remains that our options are limited due to our restrictions on our insurance, but I think we may try to switch to the Callier Center and see if their approach to helping Preston chew is any different. I am also going to start researching non-profit or any type of organization that can help offset the out of pocket therapy costs since we are not even close to qualifying for state SSI or medicaid assistance for Preston. If anyone one knows of any organization that helps with things like the cost of therapy please let me know.
For now we are still pureeing and praying - haha, funny aren't I? Randy and I are really just trying to be realistic with our expectations for Preston and it really appears that until we can get some more intensive therapy, Preston is not going to be eating normally anytime soon. We are hoping that with age his therapy might be a little bit easier and more effective, but we also know that age can add to the problem as his aversion to chewing could be becoming more, and more set in stone so to speak. We shall see, but I was thinking back and it has been months since he has attempted to put anything solid in his mouth like a chip or fry. I am really praying that we can get into the Callier Center in a reasonable amount of time and that they have some different options for him.
Luke has been doing really well. He is talking up a storm and we are busy just trying to keep up with him. He loves going to school 2 days a week and we just moved him this week to a school that is closer to house so that the picking up and dropping off at two different schools wouldn't be so hectic. Randy and I were both really nervous about switching his school, but he handled the move really well and seems to already like his new classmates and teachers. Luke actually had a harder time starting back to school without Preston than he did switching schools, but once he got the hang of going to school by himself he was fine. I also saw an old friend from A&M that was in PPA (professional program of accounting) with me. Her daughter is in Luke's class. It really is such a small world. We have had fun catching up with each other and it made our switching schools even easier. Luke had his Valentine's Day Party yesterday and it was so cute to see him with his classmates!! He kept saying it was his birthday party all day after school.
We are starting to see that Luke is beginning to notice that Preston's communication skills are different from his own, so I am just praying that I handle all that the best way possible. A few weeks ago when we were headed to school Luke started saying "Preston don't talk, Preston don't talk." Preston is extremely quiet in the car sometimes, sometimes not even making a peep, which still even gets to me when I drive alone with him, so I just tried to tell Luke that Preston wants to be quiet and that Preston doesn't feel like "talking" sometimes. That seemed to satisfy him, but he has said similar things a few more times, so I really hope whatever comes to me in the moment will be the right thing to say. Randy and I know we most likely will face some tough questions from Luke or maybe even Preston as time goes on. I suppose you just do the best you can and try to help them see that differences are what make us all unique. I'll just keep praying about that one.
We had a great Christmas despite a few rocky patches with Preston. We ended up in the ER in College Station with Preston the weekend before Christmas. He woke up late in the night on Friday night having some breathing problems due to his larygomalasia/floppy airway thing. I started to freak a little when it hit me we were in a small town, with a small hospital, not a big children's hospital, but honestly they took Preston right back and had an albueterol treatment, steroids and a great pediatrician there in no time. It was a momentary flashback of being in the hospital right before the babies first Christmas and getting stuck in a hospital in College Station was not my idea of a good Christmas, but it all resolved itself pretty quickly and so they let us go home after a few hours. Since Randy and I were running on little sleep and frazzled nerves it made for a fun filled trip home the next day, filled with lots of happy campers. Thank goodeness we were with Ash to watch Luke while we were at the hospital and to defuse the situation the next day. Poor Ash she has seen the good, the bad and the ugly of a marriage and family life. She's a trooper and always there for us and we love her so!!
Preston loves his bibles songs like "Deep & Wide" and "Jesus Loves Me." He won't be singing any of these anymore at school :-( so I got them a set of Bible Song CDs for the car. I'm not sure who loves the songs more, me or them. They just bring back so many childhood memories! Preston's new favorite is "Peace Like A River." It is so precious to hear him sing it. MiC and I had a fun time oo when they were in town playing all the ones he remembered. :-)
Preston seemed to get better until Christmas Eve evening and then it started up again, but this time sounded lower in his chest and wasn't so wheezy. I took him to a Care Now because it was later in the evening. This time it was in his lungs and his x-ray showed he had the beginnings of pneumonia. They loaded him up with antibiotics and steroids, wanted me to continue his breathing treatments and told me if he got even the slightest bit worse to book it to the ER. My Mom and I were getting nervous in the afternoon on Christmas Day because he was extremely lethargic, but the meds kicked in a little bit after that and he started to perk up. We were able to make it to my Dad's cousins house Christmas Eve night for a quick little visit with my cousins. That was so nice. I love getting to see them!!
We had low key Christmas Day at our house with Nannie, Grandpa, Ashley and Josh since Preston wasn't feeling his best. We really missed Steph, MiC and Baby Caroline. They were at there house in New Mexico with MiC's side of the family. We traded pics with Steph that day over the phone and they told us Santa brought Little Missy a lot of goodies for her first Christmas. Luke really understood Santa this year and it was really cute bringing him down the stairs to see what Santa had left. Little ones really add something very special to Christmas and we really enjoyed our holiday season this year!
This is Randy opening his suprise present from Nannie, Grandpa and me and the boys!
My Mom wanted to surprise Randy and get him an iPad he was always talking about instead of money. She knows he always spends his money they give him on medical bills. Randy was so shocked he had tears in his eyes. The look on his face was awesome and nearly made us all cry!! Now he won't put the thing down. ;-)
Josh with his A&M helmet for his desk that Randy was so excited to get him.
Luke loves the Cars movie and he loves the characters in it.
The boys looking at their sand and water table from Nannie and Grandpa.Ok, I'll end here for now. I know I am always behind so I'll update on the boys Birthday next post. I hope ya'll are all staying warm. We are really looking forward to a beautiful weekend here, hopefully making it to the 70s. :-) We are tired of the ice and snow and ready to get to the playground!! Take care everyone!!
