Wednesday, April 25, 2012

Vivid Dream

I rarely dream about anything of any significances or about anything or anyone in particular. Usually they are crazy dreams that don't make any sense. I read a lot of infant loss blogs and hear mothers talking about "signs" or dreams they get from their children who have died. I don't think much into this and would like to believe my son is at peace not "watching over me". I rather think he has no clue that people that love him dearly and think about him constantly heart aches for him on earth. Heaven = bliss and happiness to me, not a tim of heart ache waiting for your loved ones to arrive. I rather he know I'm coming when it is my time, not waiting for me to get there. Everyone is spiritually different and whatever comforts a mourning parent, sibling, etc is perfectly fine..I'm just no one to look for signs etc. Saying this I never dream about him, maybe once or twice that I can't even remember. My husband has had several dreams about him being bigger etc that were very vivid and real to him.

There are days that I miss him so much and feel a longing to be close to him, my arms ache to hold him, and would love to have a wonderful dream about him, even if it was just fantasy of all 3 of them being alive and normal etc. This never happens to me, no signs, no dreams, no paranormal activity over here, my children never "see him" etc like I have had other parents describe, and I'm not really complaining that I want any of that because it would freak me out and ruin my image of him being in perfect bliss.

Saying all this last night I had a rather intense dream that was not even medication induced. LOL I can kinda put reasoning behind some of it, but it still will probably not leave my mind in the near future. In Florida we have had a little cold weather for a few days nice enough to turn the air off and crack the windows open at night. Being 37 1/2 weeks pregnant sleep has not come easy at night..instead I want to sleep all day. So I was in bed at midnight and up by about 1:30 to pee and rotate Jacob in his crib. The house was probably about 68 degrees. I can't recall if this is when the dream started or if it was during my 2nd time I woke up between 3:30-4am. (Jacob was crying and I had to pee once more) Anyways I thinking during the 2nd attempt to go back to sleep I fell asleep and  I must have been dreaming about trying to go to sleep (or so i will continue to believe) I had my eyes closed, but I could see around my room. Then it was like a black fog that slowly took over my vision until everything was nearly pitch black. It got very cold like I was laying on ice. I remember being under the covers and shivering. For some reason (in my dream) I open my eyes to see through the dark foggy room. I'm awake because I am freezing. I'm calm, I'm not afraid. My heart feels Logan's presence in the room. My eyes are searchin the room. I look toward the bottom of the bed and there stands a small boy...he looks a lot like Andrew in height and size, he is grey and foggy though not a solid image. I can not even make out his features and I only looked for a second. My mind is saying is that Andrew at the foot of my bed, but my heart is saying its Logan. No sound, no voice, no warm fuzzy feeling, no sadness or happiness is felt. Just very very cold. I remember glancing at this foggy presence and rolling to my left side and closing my eyes and curling up under the covers again. My eyes being closed in my dream again everything turns black again. No bright lights or happy sun shines or warmth is felt. Instead my heart is aching now about how I want him close to me and I want to hold him so badly just 1 more time. I think about the baby girl I am carrying and imagine how it will feel to hold her warm body close to mine. Next thing I know my dream flashes to black and white images once more. The fog is gone, but my skin is grey. I'm laying in my bed. Everything is black and white down to the blankets on my bed.  It is so very cold. My chest is freezing and I am physically shivering. I look down and in my arms is my son. We are cuddled in the dark, but not pitch black room cuddled up in my blanket while I lay on my side.  He is ice cold he is not in a toddler state this time he is the baby I last held over 2 years ago. he was grey like the black and white pictures I have of him from the day he died. He never moved, he never opened his eyes. He was cold as ice and I just held him. No real emotion to it. I remember feeling so content and at peace though. I woke up shivering in my bed it was almost 8am. It was not cold in the house at this point and I was under my covers shaking like I was standing outside naked in the snow. Upon getting out of bed. Andrew was laying on the floor at the foot of my bed with his blanket.

Pregnancy hormones?

Sunday, April 22, 2012

The clock is ticking.

In just a few short weeks there will be a lot of changes going on in our house. Even though it won't happen until the next school year starts the boys will be transitioning out of Early Steps into the public school system. We go to our 1st meeting for this transition on the 26th. I believe this is when they will be testing the boys and see where they are at...not sure if Andrew will qualify to go, but fingers crossed I want him to. It will do him good to be around other children during the day and he is still delayed, but not sure if it is enough to qualify him.

Jacob has his procedures coming up on May 2nd. We have to be at the hospital at 6am. The 1st procedure is scheduled from 730 and the 2nd for 830. Then we will be in the hospital over night...the Ph probe testing has to be 24 hours I believe. Luckily the Saturday before this event will happen my wonderful sister is coming down from AL to take care of the other 2 kids so Jack and I can both be with him.

May 6 (assuming I make it that long) will be my last day working at the hospital I work for. This will be a hard transition going down to 1 income.  Not sure how long I will be able to stay home, but we are just going to go with it and trust God that he will provide for out needs.

Then May 8th (once again assuming I make it that long) we will have a scheduled c-section and our newest addition to our family will be here. My wonderful sister will be here to take care of my kids once more while I am in the the hospital. I'm 37 weeks today!!!! and she still don't have a name!

Along with the highlights I have a few other appointments to throw in the mix including my OB appointments and Jacob has a neuro appointment this up coming Tuesday as well. Unfortunately Jack has a bunch of stuff he has to do on his days off requiring him to be at work still so I am on my own :-)

Prayer request that the next few weeks go smoothly and we get to bring home a HEALTHY FULL TERM PRAISE GOD BABY GIRL THIS TIME!...even if she still has no name lol (BTW this is my husband's fault)

Wednesday, April 11, 2012

Lots of appointments and updates

I seen my OB today. I am currently 35 weeks pregnant. We are looking at a possible scheduled c-section for May 8th unless I go into labor before then..assuming everything is "ideal" and I am in NATURAL labor we will attempt a VBAC (vaginal birth after cesarean). Baby looks good. My blood pressure is a little elevated, but the doctor does not seem concerned. I have to make my decision if I am going to to put in my notice of resignation for my job this week as well. I won't leave until right before the baby is born though. I'm scare going down to 1 income. I will be health insurance less and it will be the 1st time I have been unemployed since I started working at 16. I have to do what is best for my children and that is for me to stay home for now. Hoping after a few months Jacob will get his medicaid and maybe some SSI back ;-)
The boys have their meeting exit meeting between the School Board and Early Steps on the 26th of April. They age out of Early Steps when they are 3 in July, so this is for the transition to the pubic school system. They will test both boys to see where they are at...hoping Andrew that sad? I want him to be "delayed" so he can go to school. If both boys and Ava all start school next year it will be just me and the baby at home during the day. :-D Jacob is also on the waiting list to go to a special needs school called Achievement Academy...hopefully I will know something in May about it. He is 4th on the list.
Andrew is now hitting and biting. Today he poured a bottle of water on me ON PURPOSE and ran away laughing. He has also learned a few curse words...NO clue where he learned them 0:-) we have to work on our language at home. For example when Jacob starts to puke I get up running to get a towel..if I miss the vomit I say "Damn it." and maybe a few other the other day I snatched Andrew's blanket from him to catch vomit and Andrew said "Damn it Jacob. That my blanket." Every now and then we catch him being sweet. Here is a picture of him kinda forcing Jacob to take a pacifier. He was patting his head telling him "Good brother."

Back yard water park LOL

Jacob seen the physical medicine doctor today in Orlando. We discussed plans on ways to manage his spasticity in his legs. We discussed Botox and Phenol injections for now and future options to include a possible baclophin pump or SDR surgery.

The Phenol and Botox is scheduled to be done on May 2nd. He has to go to outpatient OR to have it done and has to be put to sleep for the procedure. The MD has to use a nerve stimulator to inject the phenol and apparently it is very painful and he can not move so it has to be done under anesthesia. The phenol goes in the larger muscles mainly backs and between the legs .Then botox will be used in the smaller muscle groups. The phenol has an almost immediate result per the doctor and she said we can not stretch him for a few days.

Down the road..we will be looking at a more permanent solution to help with his legs. She showed me what a baclophin pump looks like. It is about the size of a hockey puck. It goes under the skin just above the hip and has a small tube that goes directly into the spinal column. She said the pump has to be refilled every 3-6 months. There is a port in the middle of the pump and a needle goes through the skin into this port to take the old medicine out and place the new medication. It has to be done as a sterile procedure since the medication goes into spinal fluid...kind of scares me the risk of infection with this one.

The 2nd option would be SDR (selective dorsal rhizotomy) there is good information about it here. I was not aware so many doctors did the surgery. I have a choice between a doctor in Orlando and 1 in Tampa. The MD said there are 2 groups of patient that get this surgery. Most are kids that have higher functioning CP and have a lot of strength without the high tone. Then the other group is kids that are so tight that are lower functioning that get it to help them with pain and positioning.  The higher functioning kids it is recommended that they get it between 3-7. Jacob is not high functioning, but if we did it, I would do it in the next year or 2. The surgery take most or all the tone out of the lower legs. So not only could he get off all the meds he takes for his high tone, but it may elemenate the need for him to have any muscle lengthening and hip surgeries in the future. She said that kids that use their tone to help them could be negative for them, because it will make there legs weak and they might not be able to bare weight. Jacob stands a lot in his gait trainer, but I don't know how much is him vs. the tone. She said it can also affect bowel and bladder function.  Just like knowing my options.

He sees a new GI doctor tomorrow. I will update if we learn anything new. I did get Jacob a new kind of button the other day just to try out. There are some awesome medical supply exchange groups on facebook full of parents that give away extra supplies they do not need anymore usually free for the cost of shipping. So I had a wonderful lady send me a AMT Mini-One g-tube button FOR FREE. I was able to use the same exact size as the Mic-key button. It is more flexible and closer to the skin than the mic-key button. The extension tubing does not come out as easy either. It has a more secure hold. Best of all if you switch and have a bunch of extra Mic-key extension tubing they fit into the AMT button perfect! I like it does not catch on his equipment like the Mic-key button does especially in the gait trainer.

I got Jacob a new seat. It is called a Wenzelite Seat2Go. I found the small size used on Ebay and then I had to buy the head support and leg abductor new from a special needs website. Overall I saved about $200 on all 3 pieces from a new price. I was a little sad that he is just about to big for the size small seat. Anyone looking into getting one he is about 34 inches and 28lbs and his shoulders come to the very top of the seat. He would probably fit in the larger size better. I am overall happy with it. It will do the job for a short time. Maybe next year if i still like it I will order the next size up. I was looking for a solution when we are on the go without having to take the wheel chair. I am currently 35 weeks pregnant, so I can't lift the wheel chair in and out of the van. I also bought a Valco Tri mode Double stroller with a toddler seat so I can push both boys and the new baby in the same stroller. The stroller is AWESOME but large and it only fits in the trunk of the van, so I can not have the wheel chair and the stroller in the van at the same time, so this little seat will be awesome. It fits in the stroller for extra support, it straps to standard chairs to be used in restaurants and it can be sat on the floor as as floor sitter so I can use it at friends and families houses.

Tuesday, April 3, 2012

Dressed In White

WorshipMob HD - Dressed In White (by Mary Como) Real. Live. Worship.

Beautiful song shared on one of the support groups on Facebook. For all the baby loss parents.
I miss my son every moment of every day...

Monday, April 2, 2012

Jacob walking

Jacob got a new gait trainer a few weeks ago. This is a video of him taken this morning walking to Mickey Mouse Club House Hot Dog Dance. By the time I took the video had probably already done this 10 times. LOL I need to buy the CD get him some headphone and put it on repeat since this is the only that seems to get him excited enough to take steps lately.