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WELCOME, GUEST |
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(1 member)
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gregery'smam…6 |
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LAURA'S LOSS AND EXPERIENCES
javbmom |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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JAMEZ IS ALWAYS REMEMBERED
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Apr 23, 2013 02:29am (EST)
Today Kai had a swallow study test to see why he doesn't drink his bottles well. He has been in speech therapy for about 7 to 8 months now. So he has improved a lot with his sucking but just still doesn't like his bottle. While the therapist was going through the test after she said "he must has a guardian angle watching over him with the way he swallows but doesn't aspirate." I said it must be his brother. Jamez is always remembered and I feel like he is always making his way to be remembered. I shared a little bit about Jamez with the therapists. Then when I was dropping Kai off at school his teacher told me to show his other teacher a picture of Jamez. His teacher is so sweet and really listens when I talk about Jamez. She loves to hear and know about him. She has told me that she even thinks of Jamez sometimes. It is so nice to know that other people even people that have never met Jamez is touched by him.
Today I needed to be able to talk about Jamez too. With Kai's swallow study I just felt like I needed to share Jamez too. Kai has had so much of what we thought Jamez would be going through so it is always nice to be able to talk about and remember him.
Jamez you are such a great big brother. I miss you so much. Thank you for looking down on us and keeping us all safe.
Kai's swallow study did go well and he doesn't aspirate although seeing how he swallows it is so weird how he doesn't. He is so close to but he stops it right before he would. He is doing good with solids. We were able to see him chew his food and swallow it also. Kai is getting so big. We had to buy him a new car seat he out grew the infant one. He is getting to long for it. He is still little but long. Just wanted to write a quick update.
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Posted by javbmom | Comments: (5) | Permalink
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MARCH FOR BABIES WALK GAINESVILLE
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Mar 25, 2013 01:20am (EST)
Yesturday we had our March for Babies walk. As I was driving to the March of Dimes office to get my walk route ticket and meal ticket I was thinking. Wow this is my 3rd year walking and Jamez wouldn't have even been 3. He would have been 3 in 3 months. It's crazy to think that I have walked for him for 3 years.
The walk was a good turn out for the weather we had. It was cloudy in the morning. Then when we started the walk it started to sprinkle. Everyone kept walking. Some pulled out their unbrella's. I had my unbrella from Share Union. When I pulled it out I thought of all you standing with me walking under my unbrella. I could hear Tracey saying "you can stand under my unbrella." I did the walk by myself well with Kai. It was so weird but nice walking with him. I did talk to a few moms and shared Jamez as they shared their child with me. I also shared Kai's story with two of Jamez's NICU nurses. I was hopping to see more of his nurses but I ran out of time and didn't make it to the hospital. I fell bad if I take Kai with me to the NICU, if there are people in the waiting room. I know how it feels to be waiting and see another baby. So I haven't been to see the nurses since last year since we moved.
I am a little disapointed in our money we raised for March of Dimes. Our team goal is 3,000 and we are not even close to that. I have shared ways to raise money with my parents, and sisters. But they all still haven't gotten any donations. I have only gotten 3 donations myself so far. I need to get out and ask some businesses if they will be willing to sponsor our team. I did pick up a box of chocolates to sell. I am taking it to work hoping that the kids will ask for the chocolates and the parents will buy them. I made a flyer for the chocolates and also made like bussiness cards with the March of Dimes logo and baby feet with my link to try and get some on-line donations. I also added a little bit about Jamez. It is kinda so new to share him with these parents. They don't know about him like the old daycare I worked at did.
I feel like it's harder to get donations this year and I don't know why. We had 2,000 dollars raised by this time last year and this year we don't even have 1,000. I am hoping that this month we will get lots of donations and met our goal. Thanks for reading my rant. I didn't mean for it to go into a rant. It was suppose to be about the walk yesturday. Guess I needed to get it off my chest. Thanks. I will share pics when I get them on the computer.
Jamez you make mommy proud still everytime I tell your story. You lived with us for 75 days and for that I am so greatful that I got those days with you. I miss you everyday. I love you. Love mommy
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Posted by javbmom | Comments: (2) | Permalink
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DOCTOR APPOINTMENT, THERAPY, PLAYDATE
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Mar 09, 2013 02:55am (EST)
Kai had his cardiology appointment on the 6th. Everything checked out good. His heart is still the same just slightly narrow and a mild leak. I was releived to hear that there wasn't any change there. He goes back in 3 months for another EKG and ultrasound of his heart. We still will be monitoring his breathing and his eatting. Making sure there is no change there. His doctor that has been seeing him from the begining is moving.  We will be going to a different hospital and a new doctor. It's All Childrens in Sarasota a little closer but not much. His doctor told me that what they were looking for with his sleen and stomach they didn't see. It looked good. Also his head ultrasound showed that he had no hemangiomas internal. That was what they were looking for. So glad that everything looked good. I was nervous that something would show up.
After Kai had his doctor appointment I met with his therapists. I was only able to met with his speach and physical therapist. His OT therapist didn't work that day. So his speach therapist is pleased with how strong his muscles are now but is consured about why he fights to drink a bottle still. He fights at school to drink a bottle and we aren't sure exactly why now. She put in a script to have a swollow x-ray done. Basically he will drink and they will take a x-ray of his throat to see what is going on. If it's air bubbles, him not swallowing right. And hopefully she will be able to figure it out to help him. She doesn't think it's behavioral since he's only 9 months now. He hasn't really taken bottles well all the time at school he has his times he does good and then the next bottle feeding he may do bad with it and fight it. His PT therapist talked with me and showed me what she has been doing with him so I can do the excersices at home too. He is such a fast learner. He is already starting to use the muscles that he usually doesn't use.
Play Date was so fun. Kai had his first playdate. He has never played with kids close in age with him outside school till the 6th. We went and saw Erin and her family. It was great getting to spend time with another share mom and her children. The girls played so nicely with Kai. Kai loved all the attention from the girls. 
It was a busy day but a great day. I have to admit I thought of Jamez offten that day. I think of Jamez everyday but that day he was on my mind a lot. I was going to upload pictues but it's taking a long time uploading to the computer. I will post them in another post.
Jamez mommy misses you and loves you. I always hold you everyday in my heart you will stay always.
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Posted by javbmom | Comments: (5) | Permalink
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STRESSED
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Feb 16, 2013 03:35am (EST)
I need to get this out. Please pray for me and my family. We are going through somethings. It is stressing me out.
Kai is going for another ultrasound. I am all done with ultrasounds but I know it's for the best for him. He gets one every 2 to 3 months for his heart. Well his heart doctor requested that he get's a brain ultrasound. So we went and had that done last month. Then I get a phone call saying I need to set a appointment for a stomach ultrasound. Mind you Kai has never had any problems with stomach. So I called his doctor the same day to make sure that this was right and he ordered it. Sure enough he ordered to have his splean ultrasound and one other thing with his stomach. So we go tomorrow for the ultrasound. On March 6 is when he goes for his heart ultrasound. I know that his doctor is just making sure that everything is okay with him knowing his brothers history. It just brings so much stress to me knowing that my little man is going through so many ultrasounds. It brings up so much reminders to. I can't help but to think of Jamez when I think of Kai having a ultrasound. Jamez had so many too in his short time. Everything Jamez had a ultrasound done on now Kai is request of the doctor.
I am so worried that somthing is going to show and we are going to get some not so good news come March 6. I hate that I am preparing myself for the worst. I am hoping for the best though.
The other thing that is stressing me is my bad credit has cought up with me and I am worried as to what is going to happen. So far I just have to fill out a paper with all my information and wait to see what happens.
Everyday since I made the appointment for Kai's ultrasound I just want to cry. I think back as to how it was going to be with Jamez if he did get better. We were going to move in with my parents for help with him. He would get therapy from Blake Hospital. He would get his care at All Childrens. We would have needed a mini van or a bigger vehichal since he probably would have been in a wheel chair. But he never made it past 75 days in the NICU. We now have Kai. We live with my parents. Kai gets therapy at Blake. Kai get's care at All Childrens. We now have a mini van. No I did not plan it to be this way nor did Gabe. But it is. It is almost like a slap in the face everytime I really sit and think about it. I am so glad and happy that we have Kai. He is such a blessing and brings me so much joy. It's just hard sometimes when what I thought we would have and go through with Jamez we didn't and won't but are with Kai. I don't even know if that makes any sence to anyone but I have to get it out.
I am so glad I have Share to come and just write my feelings.
Jamez mommy loves you so much. I think of you all the time. I miss you everyday!
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Posted by javbmom | Comments: (6) | Permalink
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SCARED
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Jan 22, 2013 02:25am (EST)
I'm not going to lie to myself anymore. I am scared as to what the doctor may find on Thurday with Kai. I am taking him to All Children's Thursday morning for a head ultrasound. He has a hemangioma under his left ear and his heart doctor wants a head ultrasound to make sure there is none internal. It scares me to even think that something may be wrong. I am praying that everything is fine and they find nothing.
I can't help but to think of Jamez durring this time too. Jamez had many head ultrasounds while in the NICU. It brings back so many memories of Jamez.
I never thought that I would be doing things with Kai that I should have been doing with Jamez. As far as therapy goes. Jamez would have needed OT, PT and speach therapy but didn't get any b.c. he wasn't strong enough or healthy enough. Now I am going through it with Kai.
Looking at Kai you would be amazed at all the things he can do and how fast he learned to do them. But he doesn't do them correctly. He started rolling over early just not the right way. He started crawling early, and now is pulling up on everything. Problem is he doesn't catch himself nor does he opens his hands to try to stop himself every time he falls over. He looks so advanced but at the same time he needs help.
It started with Speach therapy at 3 months old. He didn't have a strong suck and it made it hard for him to take a bottle. He is still getting speach. Then he started getting OT b.c. he arches his back and the way he was using his mucles I could tell wasn't right. Next is Physical therapy, we are just waiting on the paper work from the insurance.
I am glad that I caught all this early but a part of me is going back to Jamez as I know that he would have needed all this too but couldn't get it. Jamez will always be on my mind. I love Kai so much and he brings such joy to us. I am glad to be a mom to 2 little boys.
Jamez mommy loves you and thinks of you all the time. Thank you for watching over your brother and us. You are forever with us. I Miss you so much and Love you!!
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Posted by javbmom | Comments: (4) | Permalink
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HEAVY HEART
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Jan 15, 2013 02:13am (EST)
My head is in so many different places. I don't even know where to begin or if this blog will make sence but I need to get it out.
When I was at work on Jan. 8th I got a text from Samantha letting me know about Kyle. At that moment I stoped after reading the text and my heart was heavy. I wanted to break down right there and cry. But I couldn't I was in a room full of 3 and 2 in a half year olds. I wanted to go hug my baby tight but I couldn't. All I could do is act like everythig was okay when it really wasn't. All week I acted like I have been okay when I really hurt for Kate. I may not have met Kyle but I will never forget him. I will never forget to live for today.
I have come on here and I read everyone's post and I have no words. My heart is heavy and I don't know what to say. I just want us all to be together. I wish that some way we could have been in Maine with Kate. Kate and her family will always hold a special place in my heart.
I keep going back to when I was in the hospital with Jamez and all I could do was watch him fight for one more day till he was fiighting to hard and couldn't fight any longer. I miss him so much. I hold back so much and I probably shouldn't but I do.
I am so greatful to have SHARE and for all of you to be a part of my family. HUGS to you all.
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Posted by javbmom | Comments: (4) | Permalink
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CHRISTMAS 2012
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Dec 25, 2012 10:20pm (EST)
This is our Third Christmas without Jamez and our first with Kai. It was a nice day for Kai and I but not so much Gabe. Kai woke up to eat around 4:30 and then at 5 when he was finishing up I heard Gabe get up. He got sick and has been sick all morning. I feel so bad that he missed out on Kai's first Christmas. He spent all morning in the room. I brought him his gifts to open in bed. I showed him the pictures of Kai opeing his gifts. We did video tape Kai so he can watch it but it's not the same. Gabe doesn't get sick and the one day he did this year had to be Christmas.
I lite Jamez's candle this morning like I do every year. My sister got us a baby in angles wings that says baby's first Christmas. She said it's for Kai him in Jamez's arms being the wings. She also got us a big picture frame that says Angles Danced the day you were born for either Jamez or Kai or both of their picture. I am so glad that Jamez was still remembered this year.
Kai has been having a good time playing with all his toys. I wish that Gabe was able to see and play with Kai. I know that Gabe wishes he could be playing with Kai and not feeling so missarable. I have been holding up good enjoing my time with Kai and watching him play. I spent time with Gabe in the room while Kai slept I don't want him to feel left out. Also when I am around him he makes everything better even though he doesn't feel good. I hope that he will feel better by tonight he was finally able to sleep.
Jamez Merry Christmas. We miss you so much and think of you all the time. We love you so much. I hope that you are having a great Christmas with all your family and friends in heaven. Jamez we love you so very much and miss you always!
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Posted by javbmom | Comments: (3) | Permalink
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GREATFUL
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Dec 12, 2012 01:52am (EST)
In my last blog I posted that my car broke and we couldn't afford to get it fixed. It was broke so bad that it would have cost more to fix it then to get a new, better car. Well yesturday Gabe wanted to go check out some vehicles with my dad while I was at work. They found a place willing to give us 500 for our car and they sold us a mini van for 3,000. It may be a older modle but in great condition. It's a 99 Dodge Caravan Sport. I actually like it. I never wanted a mini van nor did I think I would ever drive one. But we need a vehicle and that is what Gabe found for us. He did all the paper work and got everything done for us. All I had to do was sign the papers since the car was in my name. I am so greatful that Gabe was able to find a vehical that we can afford and one that is safe for our family. I am also greatful that my dad and mom were there to help and lend us their car when I needed it. Thank you all for the prayers.
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Posted by javbmom | Comments: (5) | Permalink
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