Sunday, February 19, 2012

Birthday #3

We didn't have a party on Jimmie's birthday, that will be later this month. We spent the day doing what Dimmie wanted to do. (that's how he says his name) I had him open his presents in the morning so he could play with them all day.




Excuse the Christmas wrapping paper, its what you get having a birthday in February. 


Can't get enough of Bob the Builder. (and no Handy Manny doesn't cut it)

If you have boys that love trucks, this is an awesome book for winding down at bed time.


He has been on a dinosaur kick... (he calls them rooarrrs)



And the "mother load" - a CAT take apart loader! This is the perfect toy for Jimmie. He is always working on his trucks trying to take them apart, so now he can.



I didn't show him how it works, he figured out in no time.



I was worried he would get frustrated. He has a bit, but he can do it all by himself.



Daddy had to get him a TONKA grader. More of an outdoor thing but he loved it as well.

Here he is working the tools!





He didn't quite get the candles blown out. Daddy helped him. I asked him if he wanted to go to McDonalds for his 2nd breakfast. (don't judge) We don't go that often and it is high in calories. He said, "nah stay home." We did go to Tanties to see the cousins and show them his new truck. Cole loved it, he told me he wanted one for his birthday. It was a low key relaxing day. Dimmie is free! (that's "Jimmie is three" in his language.)

Love, Rachael

Wednesday, February 15, 2012

1st day at school for speech therapy

I really wanted to write how wonderful it was...... I guess I have to say I was disappointed. When we got there they had no record of us being on the schedule. We find out Miss H. is on an unexplained leave of absence. The director came in and started to discuss scheduling asking if we had to come on Tuesday and Thursday?  Umm I planed it all out, if you know me, you know I planned it down to the minute! :) She told us that all the other speech pathologists in the building would be taking over for Miss. H. They had a small group going right now and she would go ask Miss. "I did not get her name" if it would be alright for Jimmie to join their group. It was.

As we were walking to the room. I asked the director if this Speech Pathologist knew of Jimmie and our goals for him (obviously not as they were not expecting us.) she said the therapist doing this small group was the director of the special ed program so she had seen his name and file to approve him, but she would go over his file and make sure she knew what his goals were.

We get to the room with the group already in progress. Jimmie of course would not let go of my hand. I asked the teacher if I could sit in with him, she was very accommodating (Justin thankfully came with us) The two other students were bigger and seemed older. They were working on more enunciation, not adding words to their vocabulary. I don't want to seem biases but Jimmie was not challenged intellectually at all. I don't think by any means that he is brilliant but he seemed ahead of the game cognitively.

About 1/2 way through I told Jimmie we were going to wait outside the door, we left and he did great. That was a huge victory, a few times Jimmie looked at the door and saw me through the window. He talked to the therapist a lot more than I thought he would and even interacted with one of the little boys. As the therapist was asking him to clean up he said "stay play" He liked it.

It was disappointing to me that Miss H. was not there. I understand her having to leave we have no idea what is going on in her life. I understand scrambling for teachers trying to cover classes, it is just unfortunate that it had to be me :)


I am trying to take this as a opportunity to work on being flexible. I know I cannot control everything and this is a perfect example of that. I have a lot of things swirling in my head. For now we are going to do as planned. At least till spring and then reassess and see where we are at. I am very grateful we are going to the Children's Hospital once a week for speech. If we need to I might get more involved there. The hospital is quite a long drive for us though. I would love for the school to work out. I will of course do what is best for Jimmie.

Here is Jimmie on his first day:


Love, Rachael

Saturday, February 11, 2012

Dear Jimmie- Happy Birthday (3 Years Old)

Dear Jimmie,

Today you are 3 years old. I am so proud of you and how far you’ve come. You are a hardworking and brave little boy!

I’m having lots of memories today about your birthday 3 years ago. I was teaching dance when I got the phone call that you were likely on the way. I had let my phone run out of batteries. I think I was feeling rather confident you would stay put in your mommy’s belly at least a few more weeks. So Ma had to call other people who were at the dance studio to reach me. As I drove to the hospital I had butterfly’s in my stomach, but deep down there was a steadfast peace that was very significant to me. I felt if you were coming now, the time was right. I thought of how hard your mommy had worked over the previous 4 weeks to give you the best possible chance to survive. I somehow knew you would be fine and I was almost relieved to start this next part of your journey.

When I got to the hospital I found your mommy definitely in labor. She was so brave. I remember at first she was saying, “this really needs to stop!” But as time went on and every resource to stop the labor was used, her mindset started changing. I could tell she began to accept this was happening, surrender to the inevitable. Your Ma was there, your daddy (of course), your Grandma Gravitt, Pa and Grandpa Gravitt too. I remember timing your mommy’s contractions by looking at the clock and writing them on a piece of paper. The machines were not picking up anything so I felt unless we gave the staff an accurate picture of what was going on, they may end up not being ready for your birth. That was my biggest concern as the afternoon wore on. In retrospect they are very experienced and I don’t think they would have been caught off guard. But Ma and I made sure they knew our family history of lightning fast births.

Once we got to the delivery room I stood in the corner with Grandma Gravitt and Pa. Ma and your daddy stood right by your mommy. Grandpa Gravitt was sick so he waited outside in the hall. Your Mommy didn’t really want to push you out because she knew you would be so tiny and that you would have to fight really hard to live, but the doctor made it clear to her- this has to happen and the best thing you can do for Jimmie now is to help him be born.

You were so so tiny when you came out that I couldn’t really see you in the doctor’s hands. He held you with his hands cupped together as he carefully passed you off to the NICU staff. They took you over to a table a few feet away from your mommy and began working on helping you breathe. You made sounds when you were born and while they were working on you. We could hear you squeaking across the room. That made me smile through my tears Jimmie. Your daddy stood pretty close to the table and the NICU staff encouraged him to talk to you.
















Though his voice was a little shaky he cheered you on Jimmie. I know it made you fight harder when you heard his voice. There were some pretty tense moments while they were intubating you. It seemed they had to try a few times before everything was in place to assist your breathing. After they got you somewhat stabilized there was a visible relaxing of the NICU staff. I remember one of them smiling and looking over at your daddy and saying, “congratulations dad!!”
















Then they carried you over to your mommy. She talked to you and kissed you on the head.
















I remember her sayng, “oh he’s so small, he’s just so small.” I felt the same way. We all knew you would be tiny, but nothing prepares you for the reality. Seeing a human being that small is a shocking, but awe inspiring life changing experience.

As they took you from the delivery room to the NICU I felt good about how you were doing. Your cries had been surprisingly loud and they told us your apgars were 6 and 7 which I thought was amazing. Your daddy went with you to what would be your new home for the next 88 days. I stayed with your mommy for a while. Your mommy was in quite a bit of shock. That evening we got reports that you were stable. Your mommy went in to see you briefly and so did your Uncle Eric who took some pictures.

















Everyone was very sober because we knew the long hard journey you had ahead of you. But Jimmie we never want you to think we were sad about your birth. We were not! We were filled with joy to meet you! We love you so much Jimmie. Any sadness was out of our love and concern for you.

As I remember that amazing day I feel joy unspeakable and excitement. I thank God that He has redeemed my grief and my fears and now your birthday to me is the most exciting day of the year!

Jimmie since the day you were born you have gained 21 lb 4 oz! You are 23 lbs 4 ozs now. At birth you were a mere 1 lb 8 ozs... You have grown 24 1/2 inches. You are  36 1/2 inches tall. At birth you were a mere 12 inches in length. You have learned to breathe, eat, sleep and now you are learning to talk. You are a bright, beautiful boy. You have so much joy inside you. To look at you, to see and feel your love of life is to see and feel God’s love and mercy.

I just love this picture Jimmie! It shows your joy. And your silliness, you colored this beard on yourself.




















I am so blessed by you Jimmie. I think I say this every year but it will always be true, "you are my hero"! I love you Jimmie!

Your Tantie

Friday, February 10, 2012

byebye

We are so sad to see our therapists go. Jimmie turning three makes him too old to receive our state's early intervention services.

Miss T. has been with us since the week we came home from the NICU. We laugh when we remember she first saw him before he was supposed to be here. Miss T. has been so helpful in giving tips and tricks to help him to sit and concentrate. We will miss you.


Miss L our OT. She has been with us though the feeding crises from about 2 months old adjusted. She has had wonderful suggestions and tips as well. She taught Jimmie how to work an Ipad! Jimmie tends to hit his fine motor skills a little late. Miss L. has been so patient and relaxed, and very reassuring to me. We will miss you too!


Miss D. our Nutritionist. I cannot say enough how much she helped us. She is the only nutritionist in our area that supports food through feeding tubes. She was so helpful in dissecting how many calories Jimmie needed without over feeding. She has never been happy about his weight but is wonderful at using other factors on how he is overall developing. How he was doing cognitively and motor were always a part of our conversations. She has been nothing but supportive in my "off the beaten path" approach to things. Goats milk, keifer etc.. She was all for not going the pediasure route and had my back with the Doctors. I will miss her reassuring voice telling me he is ridiculously skinny but looks great! I hope her mission to have tube fed kiddos on blended diets will become the norm. You know Miss D. you will be hearing from me.

Miss H. had been more a part of our family that I would have ever thought possible. She has been with us for at least a year and a half two times a week. The smile Jimmie gives her at the door is priceless. I can't imagine her not being there :(  She has helped Jimmie learn in his own way. We have had our sessions with him jumping on the couch,  playing in his little pool outside,  him rolling and jumping all over. He seems to do better when he is moving rather than concentrating solely on his speech. I can't tell you how many tips and trick she has taught us and I use everyday. When she started with us he had maybe 2 words. Today I can't even count, you might not be able to understand them but the improvement has been vast. Her dedication to helping Jimmie and all the children she works with is a wonderful passion and we will be forever grateful.



It is a bittersweet ending. I have had a few tears saying goodbye. We will of course keep in touch, but it won't be the same.

Thank you from the bottom of my heart.
Rachael

Thursday, February 2, 2012

Therapy Services Changing

Jimmie will be 3 in a few short days. When he turns 3 we lose all of our in home therapy, through Missouri's First Step's birth to 3 program. We qualified because of his low birth weight (1lbs 8oz)

We saw Dr. H our developmental Pediatrician in Dec. He was very impressed with Jimmie's improvement with speech. Although he acknowledged that he still needs a lot of work. He didn't say anything about his weight, yeah! The best news was he released us from his care! We found Dr. H when we were in the midst of the feeding issues and he was a Godsend.

Jimmie's therapy legally has to be taken over by the school district. We started the process in December. Our local elementary school has been very accommodating for what I want. They have a early childhood preschool for special needs children 4 days a week for 3 hours a day. Jimmie would qualify, but just for speech. I could not imagine him doing that. I asked to do two 30 min speech therapy session, in a small group setting a week. I have had multiple meetings with Miss H. I like her and I hope Jimmie will respond well. I am excited to see him work with other children and hopefully he will have more incentive to speak.

In addition to the school district. We are doing a one on one with Miss J at the Children's Hospital, one time a week. This will be a very different schedule for us. Last week Justin was on a ski trip, I had to take Jimmie in town 3 days in a row to have my Mom and Rod watch him while I was at work. By the 4th day Jimmie said "stay home"! So we did, two whole days in a row. I am hoping this schedule is not to much for him.

It pains me to change things up. In the last 3 to 6 months we have seen a huge improvement. He is still very delayed. But is finally putting the ending on a few words. We also upped his fish oil to a double dose every day. (Dr. H.recommended this) I use Nordic Naturals Fish Oil Gummies.

I am excited for this new phase but would appreciate prayers that Jimmie adjusts well to the new schedule and responds well with continued improvement.

I will end this with one of my favorite videos.

video

God Bless,
Rachael