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Heath's Journey 12/15/08We are doing well one of my girl friends moved in next door this month and just having her look in at us daily has been helpful. Sometimes he gets Peter from school and has been doing some grocery shopping for us. I think once I get a baby video monitor I will feel even more relaxed as I still don't do much when he sleeps but sit here in case it goes off.
Heath's Journey 12/14/08Things have relaxed. First off after that last post I just had to get rid of my stress. Posting took a lot off my chest and then I was able to talk to DH about our feelings. We decided to get and IUD so prego is not something else we have to worry about until Heath is much older. That was emotional too but the best thing and I have made peace with it. Being he is a Oct baby and school cut off is Sept first in GA he will be home a whole yer longer then Peter and Tessa anyway.
Heath's Journey 12/12/08 part 3I am not doing well tonight. Just it is catching up to me. His pluseox is not working I have gone thought 2 sensors in a week and we only get 4 a month with the insurance. His apnea mointer had 4 "thank god" false alarms today but still nerve wracking and now his o2 won't stay in his nose he is so wiggly.
Heath's Journey 12/12/08 part 2Cranialfacial Dr called back. He said after talking to my pedi and viewing the sleep study he wants to see us back on Jan 8th for another visit. He said he is going to let me say how I feel with how things are going at that point and then made a determination of doing another sleep study at that point. I will know how my baby is doing more then anyone then.
Heath's Journey 12/12/08http://www.brianpalmerdds.com/bfing_reduces.htm
Heath's Journey 12/11/08Can I tell you about my day? Ok so first I had it all set up so Peter could go to school at 8:30 normal time and the neighbor was going to take him for me so I could leave early for Heaths 9:15 appointment on the other side of Atlanta. She calls me at 6:45 and had to cancel on me. So fast get the kids up and dressed and off to school. BTW I get the worst Mama of the day award for sending Peter to school without breakfast I just forgot to feed him!!!! I got him to school at 8:10 the earliest they let you drop off.
Heath's Journey 12/9/08He set his alarm off for the first time today since leaving the hospital on Sat. Scary he was in the car seat and I was driving when it haped. I just started yelling his name and slapping his face (only thing I could do while driving) by time I pulled over he was breathing and awake.
Heath's Journey 12/7/08 part 2Well we survived. I took him out of the house the moby wrap is awesome. I was able to get him in it and all his wires. Put Peter and Tessa in the cart and the monitors in the baby seat. His nursing is going well and he is not coming off the breast as much when I have the o2 on. We did have 2 small attacks when he was out and we have not had any at home so I am thinking going out causes him stress his HR at one point was over 215 and his pulse ox dropped to 77, waking him solved his issue but still scary when everyone is looking at you and your kids is covered in wires and alarms are going off.
Heath's JourneyIt has been a long time since I last checked in. Heath is now in a full day KG class and 13 months post spinal cord surgery. He is doing well and looks so cute with his glasses on his head.
Heath's Journey 12/10/11Where to start today marks the year of finding out that Heath has Chiari Malformation.
Heath's Journey 10/6/11I endded the last blog by telling everyone how Heath got into the Hearing impaired program. Well school has started and he LOVES it. Every day we pull up to the driveway and he says "we here" :)
Heath's Journey 7/11/11Plan Update: April 28th Pulmonologist vist (this well and no med changes)
Heath's Journey 4/6/2011ENT visit today:
Heath's Journey 3/25/11Still on the fence on if the surgery is worth the risks. So I asked him if we did more testing would that give us any more info. Heath's last MRI was in Nov and was to rule out a twisted neck. Now that we know he has Chiari I asked him to do the CSF MRI, and a full spine to look for a syrinx or teathered cord.
Heath's Journey 3/23/11Ok how to start. I'm going to have to go back a few weeks so this may get long. On March 11th I got a phone call from the Nero S nurse and she read me the Apnea results and they are not good. His sleep study was 6 weeks ago, so after that wait you think the news of what we are doing next would be better then "come back for a visit in 3 months"!!!!
Heath's Journey 2/9/2011We just had Heaths IFSP 6 month visit. Communication Development: Communication 17 months, receptive skills 20-22 months, expressive skills at 18-20 months. Congnitive Development: 23 months Social-Emotional Development: 16 months Adaptive Skills: 14 months Gross motor skills: 19 months
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