Monday, July 6, 2009

A vacation in pictures

I am a bit overwhelmed today. Sometimes I feel like no matter how hard we try to deal with Jude's issues in a positive manner we get pulled into negativity. I am sure that it's lack of sleep again that's talking. Jude was up until 2:30 last night, and Mike was beyond frustrated so I took over. Sometimes I am not sure which direction to step to help Jude, and which direction to step to keep the rest of us sane too. Today I am looking into getting Jude a bath chair, a pediatric car seat, and he will eventually need an adaptive stroller. So the question is.......where do I find that stuff in DFW that accepts medicaid provided through MDCP. I also have personal insurance for Jude, but I believe this goes through MDCP. I get lost, and by not being at home I feel even more lost. I am sure if I was there for Jude's therapy I would know more about where I need to find items to help him. I am also setting up Jude's follow up vision screening with the pediatric opthamologist. In addition he still needs to see the pediatric hematologist. I can say that the reason for Jude's stroke is not relevant, but is actuality it is. #1. I need to know if Jude had any blood issues that could potentially lead to another stroke. #2. If there is something underlying (like my platelet issue) and if so, can this information help other children in the future? #3. Does he have any issues that need to be treated? I guess it's a pleothra of questions that need to be answered.

So it should be a week filled with appointments, and information. Jude ate pretty well while I was at home, but he is still resisting the bottle at first. He literally throws a hissy fit, pulls away from the bottle, and then will finally calm down and eat. You have to keep the bottle in his mouth until he gives up, and eats. Regarding baby food he will eat some of it, but only after he has acted like a sprinkler, and the feeder is coated in food. If anyone has had feeding issues like this before please let me know what you found out.

Jude will be one in September, and his next neurologist appointment is August. Since we will be approaching his first birthday we will be looking into a new EEG, and a new MRI. I am afraid they will have to put Jude asleep for the MRI, which scares me to death!!! I may request the MRI at cooks, and have the information sent to our doctor in Plano.

So without further delay here are all the pictures I promised.

Emily dropping off her smile boxes at Cook's Children's Medical Center:
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Emily, and Jude at the zoo:
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Emily, and Jude "watching" fireworks from her window:
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Jude practicing keeping his head up:
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So last night some of our friends came over Natalie, Andrew, and their daughter Camille. We had a great time talking, and they have been such huge supporters of Emily's Smile Boxes. We watched their little daughter play with Emily, and laugh herself silly. Em had such a great time playing with her, and "babysitting" her. Em was literally out of breath at one point, and looked at me saying, "wow babies are hard work". I just slightly grinned as I looked at Jude on the floor just laying there. He didn't do much. He didn't run around, giggle, sit up, or anything that Camille could. I felt sorry for him, and for us, but then shook it off as I picked him up. Jude looked into my eyes as I held him close, and it's like he could communicate with me. I believe that there is an instinctual nature for a mother to protect, and communicate with their child. I wished Em could share in more playful moments with him, but I know she loves him with all her heart. We were so happy they came over, and Camille took a liking to Jude's yellow chair. In fact any time I put Jude in there she would want us to get him out. Here is a picture of her telling Jude to get out,
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It was sooooooooo cute!!! She is just precious. I truly enjoyed their company.


Amber said...

Have I told beautiful Jude and your are? They are. Inspiring...

Bronx Cataldo's said...

This whole world we are involved in does overwhelm us from time to time. The equipment is hard to say we need but is a blessing. The bath chair and the stroller are great. We just used a regular carseat facing backwards until he was about 17mths and then we turned him forward. The last big item we got Finny was a bed but he was almost 4 when he got it. Now we have to do battle to get him a walker. Must get his PT at school to write the justfication letter.
Hang in there both Mike and you are doing a great job.

jocalyn said...

Jude's head control looks great.
We have Kendall in a rear facing carseat bought at Babies R Us. Medicaid would not cover a rear facing seat for us. As far as ordering everything else, you should check with your ECI PT to see if they have any bath seat loaners. If not you will need to get one ordered ASAP (they take a long time to come in) same with the adaptive stroller. Your PT should get the ball rolling on that. Usually they will recommend a Medical Supply place, come evaluate him, measure him, then send it to your Dr. for approval. Then they run it through Medicaid and Insurance. Our whole process took like 4 months. I'm sure you could just call a place, but more than likely, your PT has someone they trust and have worked with in the past. You shouldn't have to do anything except stay on them to get the process started. Its a headache, but in our case Insurance and Medicaid didn't bat an eye at covering the expense. If they do for you, THEN you take the denial letter to your MDCP case worker and they will help with extra funding. But I don't think they will give you a hard time about it.
Call me if I can help at all! I'm by no means an expert, but we were successful in getting all that we needed...

andrea said...

Emily is such an awesome big sister. She Rocks!!!

P.S. i love jude, too!!

Ellen said...

Aw, Jenn, I loved these photos, especially the one of Em holding Jude and looking at the fireworks. And I was so glad to see Jude lifting his head! That's awesome.

Those early years ARE so overwhelming, as I read your post I was reliving what I went through. I don't know how to help you navigate the equipment thing, but oftentimes Max's therapists were able to steer me.

When Max was little, and had some issues with vision, we were hooked up with a vision therapist through The Commission For the Blind who'd come and bring him really wonderful developmental toys. We also got some respite care from The Arc, look into those things, it'll help Jude AND you. You need to take good care of yourself to take care of Jude.

Anonymous said...

You have the most beautiful children..... I just want to squeeze them both till they beg for mercy! (Jude's little neck.... is torture, I just want to smoooooch it!!).

Emily is such a thoughtful, caring and sweet girl... I know you're very proud of her Smile Boxes and how her heart needs to extent it's arms to other kids with her same situation!

I just wanted to take a moment to let you know that all of this is a reflection on you and your husband and how your hearts are raising these little ones! Give yourselves and pat on the back and stand a little taller today.... you deserve so much!

Your family is in my prayers.... everyday!

Anonymous said...

Hi Jenn,
Wonderful pics! I especially love the Jude tummy time one. Awesome head control!
Parker had her MRI in February. I too was freaked by the sedation factor. Hers went really well, and it wasn't as scary as I had imagined.
Hugs and kisses to you all from Parker & I!
- The Turtle Fam