Monday, December 26, 2011

Hope everyone had a Merry Christmas

I had a hard time sleeping Christmas Eve. I was up around 630 Christmas morning. I woke Ava up around 645 and asked if she wanted to help mommy make breakfast. She looks at me with sleepy eyes and says, "Did Santa come yet?" I told her Santa came and left hours ago...She jumps up screams, "Daddy Daddy wake up! Santa left us presents! She gets up, I follow her. She runs down the hall from my bedroom and doesn't even look over at the Christmas tree and head strait for the plate of milk and cookies. She exclaims, "SANTA DRANK ALL THE MILK AND AT THE COOKIES. OH LOOK THE REINDEER AT THEIR CARROTS." Then she turns her attention to the tree. She run over and immediately gets into her stocking and tries to get into everyone elses stuff as well. She examines her new doll bed and starts unloading her stocking into it. It is cute that she can recognize and spell her name now. So, she was able to pick out all her presents.

I made her wait to open presents until after breakfast. She was not happy about this. One of the only times I have seen her deny food. Telling me she did not want breakfast. We had scrambled eggs with cheese, biscuits, gravy, and bacon for breakfast.

Once the present opening began Ava was all into it. Andrew on the other hand really had no interest in opening presents. He got into his stocking 1st. He was perfectly content with the coloring book and crayons her 1st pulled out. Then he found the bubble wand. The icing on the cake was a cheap little magnadoodle. As much as I tried to pull his attention from the"cheap gifts" he did not care. LOL Jacob was also not a happy boy. He gave us sad face and cried most of the time. Jack helped him open his gifts while I opened Andrews,

I was not feeling well yesterday so we all went back to bed around 10am. We slept until around 1230. Jack got a hot dog cooker for Christmas. I went to the closest place open to get hot dogs and buns for him to play with his new toy (Walgreens...spent almost $6 on a pack of hot dogs). Ava came along for the ride and when we got home Jack's parents were there. We spent time with his parents and opened more gifts. Jack's parents left after a few hours and we took another nap :-) Did I mention I have been sick and I feel like crap :-)

We woke up from 2nd nap time around 6:30. I made dinner. Ham, mashed potatoes and gravy, green beans, corn, and rolls. No one really ate it except Jack. We made a trip to the south end of town to Jack's parents to return Jack's dad's glasses he forgot. From there we went to Logan's grave. Last year we went on Christmas Eve...I think. Jack, Ava, and myself lite candles and sang Christmas Carols. (this is Jack's idea and his way of including our son in our Christmas <3)

Jack got me the most beautiful, thoughtful gift I think that he has every taken the time to buy for me. He got me a glass photo frame with a spot for a picture on the left and on the right it has Logan's name and his birth and death dates followed by a poem about Heaven.

This is what it says:
I am home in heaven, dear ones.
Oh, so happy and so bright!
There is a perfect joy and beauty
in the everlasting light.
All the pain and grief is over,
every restless tossing passed;
I am now at peace forever,
safely home in heaven at last.
There is work still waiting for you,
so you must not idly stand,
do it now, while life remaineth . . .
You shall rest in God's own land.
When that work is all completed,
he will gently call you Home;
Oh, the rapture of that meeting
Oh, the joy to see you come!
It brought tears to my eyes. I was so surprised. I never imagined he would get me such a beautiful gift.

This is the picture I put in my beautiful picture frame.
Logan was actually watching The Lion King on a VHS tape when I took this picture. It was the last time I seen him "healthy" before he got really sick and died...I think this was about 5 days before he died. Anyways, I bought the Blue ray of The Lion King for Jack this Christmas. Jack is at work right now, but Ava kept asking to watch it. Ava, the babies, and I just finished watching the movie for the 1st time. I have not seen it in years and it was the kids 1st time ever seeing it. It was just kinda fitting. I continued to look over at the above picture in my new frame and it brought comfort knowing his brothers and sister were getting to watch the same movie he was watching when he was ignoring me while I tried to make him look at the camera.

The day after Christmas has been a pretty nice day. My house is trashed...EVERY. SINGLE. ROOM. There is boxes and toys EVERYWHERE. At some point I am going to have to clean this place before Jacob's therapist shows up tomorrow. We did a little shopping for the 50% off stuff this morning. We had lunch at Sonny's then Jack and the kids took a nap while I loaded up some old toys and donated them to a friend. I can't wait for bedtime!


Saturday, December 24, 2011

Merry Christmas

Santa arrived shortly after the kids went to bed. The presents are all under the tree and I placed the stockings out.

I have been okay all month long with no big emotional break downs. I placed Logan's empty stocking under the tree and I lost it. I looked around and found a stuffed snow man to fill the empty void inside the stocking. The tears started rolling and I couldn't stop them.

Last year I placed his 1st Christmas picture (which I believe has fallen behind my dresser) and the bear that he received from the NICU with the Santa hat on in his stocking. Last year it brought comfort that I had these items that laid in his crib with him on Christmas morning with me for the 1st Christmas he was missing.

This year I am just not prepared. His foot print ornament it still lost somewhere in his memory box. His picture is hiding behind the dresser and his Santa bear is MIA. I honestly don't even have the strength to look for it. Jack asked me to go through his box and organize it the other day and I just can't right now.

On a happy note. Ava is SOOOO excited about Santa's arrival. She 1st asked me if she could sleep in the couch so she could give him a hug when he came. I explained to her that he had so many children to see that he comes so fast you hardly see him and that is why you visit him before Christmas to tell him what you want. She then asked that when she heard him say "Ho Ho Ho" could she just sneak out and take a peek at him.

Glad to say she is fast asleep and unfortunately she missed Santa's arrival. He did leave her a thank you letter for the milk and cookies and food for the reindeer. I can't wait to her reaction when she wakes up tomorrow. This is so much fun!

2011 Tree and presents

Ava;s doll crib from Santa

The letter Santa left the kids thanking them for the milk, cookies, and reindeer food.

Stockings 2011

Tuesday, December 20, 2011

Wheel Chair Accident!

Yesterday started as a very lovely day. Jack, me and the kids all layed in my bed most of the morning. We had a late breakfast and then took a nap. The day started to go down hill shortly after that.

Had to deal with some household issues that delayed out departure by about 2 hours. We had plans to go to Celebration Florida for the bubble snow and picture with Santa like we do every year. From there we had plans to go to Down Town Disney to buy our yearly Christmas ornament from the Christmas store.

We finally make it to Celebration. Jacon is in his wheel chair for the picture. Jack has Andrew in the stroller. Ava, and my 2 nephews Michael and Gavin were walking. We make it to the Santa area, deciding to take pictures before the kids Christmas cloths turn into a wet bubble mess. All goes well. They take several photos. 1 with all the kids looking and Jack looking, but of couses I was not because I was looking to see if Jacob was looking. LOL it was the best picture, so it did end up on the Christmas cards. We leave Santa and walk out to the side walk. The other 4 kids are running around like animals. I asked Jack to place Andrew in the stroller and strap him in before he ran out in the road. Then I asked him to keep and eye on the kids because I was turning around to get the picture. When I asked he was standing in front of Jacob's wheel chair. I guess he did not hear me. Jacob was on a flat side walk. I was telling myself to put his break on, but then I was like he is fine. He can't go anywhere. Not like we were going down a hill. My back was turned, Jack's back was turned putting Andrew in the stroller. The other 3 kids are running around chasing each other. I hear a crash. I look behind me Jacob's wheel chair was not there. I guess one of the kids bumped his chair or there was just enough of an decline of the side walk that his chair started to move. At the end of the side walk was a curb before the street. There was a drainage area under the sidewalk. Jacob's wheel chair moved forward and the front wheels went under the lip of the drainage drop and his chair went forward. He went face 1st into the road. As soon as I heard it. I turned them screamed and ran toward him when I realized the horrifying thing i seen in front of me. My son face down in the road with his wheel chair on top of them. Jack and I picked him up and I checked him out. Mrs. Claus had jumped up from her chair for the photos and ran to check on us along with several other people.  Mrs. Claus called 911. Jacob had a big scrape on his forhead and his nose looks a little a little swollen. The ambulence came and checked him out. Even though he was acting normal besides him crying and the scrapes we decided to have him looked out because he did go face 1st into the ground with the force of the heavy ass wheel chair behind him. He went to the hospital in Celebration and they did a cat scan. Luckily everything came back normal!

LESSON LEARNED! IF MY HANDS ARE OFF THE WHEEL CHAIR THE BREAK WILL BE ON. I felt like the worse mom in the world. My helpless Child could not even tell me or stop the chair on his own. I was so embarrassed for all those people to witness the horrifice thing that happened due to my neglect to put the break on the wheel chair. I am so greatful he is okay. He is fine today. His scrapes look better today and he is not crying like he is in any pain.

Tuesday, December 13, 2011

Holidays and Child Loss

I was picking Ava up from school today and she tells me. "Mommy, I painted a picture today at school." I ask her what she painted. "A picture of Logan with God." Immediately tears start falling down my face driving down the road. She went on to tell me about how she has to make him a present. Then she totally went off on something different. She then told me about Mary and how she had a baby...but then she told me Mary's baby was named Logan too and that he grew up and died. Then I corrected her that Mary's baby was named Jesus and that his birthday is on Christmas and we celebrate his birth by giving each other presents. I think it is sweet that she thinks about her baby brother even though she gets it confused with everything else.

Not many people talk to me about him. I'm sure it is because they don't want to make me cry etc... Normally talking about Logan does not make me cry. I enjoy talking about all my children. Ava just caught me off guard because I didn't expect her to think about him next to God. We explain to her that Logan died because he was sick and could not breath and that he lives in Heaven with God...but when we visit his grave she still calls the cemetery "God" and she understands he is buried in the ground by his head stone.

I guess I was just extra emotional because I decorated the Christmas tree yesterday. I put up the babies 1st Christmas ornament. They all hang on the same branch because it was the only Christmas they were all alive. I also hung their ornaments I bought last year. I found the perfect ones. 1 is a baby with wings that I wrote his name on and a message on the back about his 1st Christmas in Heaven. The other 2 are babies with wreaths with 2010 on them. I wrote Andrew and Jacob's names on those.

November-January puts Logan on my mind more than normal. I think every few days "What was going on with him 2 years ago on this day?" I have this blog as a reference to when he was sick or well. I constantly think "Was this the week in November when he almost died? Was this week he was on nitric oxide?" I would go on to remember him being very swollen and I remember praying at his bedside begging God to heal his lungs. Then after several days my miracle happened .He started getting better. His oxygen needs went lower and lower. I remember him becoming well enough to go to surgery to have the trach placed. December 2009 was a month full of anticipation of him coming home. I remember him being weened off the vent. I remember the heart breaking disappointment when he went on isolation late December for another hospital acquired infection(RSV again I think). I remember him being on isolation for what seemed like the millionth time on Christmas day. I remember not being able to take the kids to see him. He was having a hard time breathing on Christmas..I believe they even had to bag him. Then end of December brought better news and lower oxygen settings. I remember him being nearly on room air. The beginning of January he had a g-tube placed and a hernia repair. He never totally rebound after surgery. I remember him slowly requiring more and more oxygen and the staff assuring me he was still on track to go home by early February. Then the smack in the face happened January 27th. He went bad...really bad. He got worse every day until the day I decided to let him go. January 30, 2010. I nearly regret that decision every day. At first I didn't regret it. Now I constantly wonder if God still had that last miracle waiting for him. You know how you read these stories about babies that had been pronounced dead and suddenly come back 20-30 minutes later. Maybe I lost hope and faith to fast? Maybe I should have held out until he was officially pronounced brain dead? I feel I was selfishly think that he would be permanently brain damaged after the unreadable co2 levels etc. I remember thinking about how I did not want him to live a life on a vent with catastrophic brain injuries. I remember thinking about how I did not want 2 brain damaged maybe part of me having the vent turned off was selfish? What if today he was that walking miracle child that defied all medical science? They exist but I gave up.....I was not strong enough to fight anymore so I convinced myself that my decision was best. I do think of all the pain and suffering he endured during his short life but it will never stop me from wanting him every day.

My heart still swells with joy when I see the children and adults who have beaten the odds and over come something life threatening .I do believe that God had a hand in their survival. In the back on my mind though I am angry that I can not give the testimonial of my brave little boy beating the odds. Then my thoughts turn to Jacob and how I used to live in denial that he was not going to be profoundly disabled. As days, weeks, and months pass I feel like the hope of that miracle is slipping away as well. He will do something so simple as suck on a pacifier by himself for 30 seconds and bring me joy...then he just stops.

Jacob had his 6 month review for early steps with his physical therapist and his early interventionist. He is still around a 3-4 month old developmental level.  Andrew was nearly caught up but some thing he was behind at an 18-20 month old level.

I ask my friends for prayers for the new year. Pray for me and my family the prayers I have a hard time doing myself. I defiantly need someone to lift me up in prayer to pull me out of this funk. Hoping 2012 bring great things to my family. We have something really big happening mid 2012 :-)

Or Tree

2010 ornaments...must buy all the kids for this year still :-)

Logan's grave getting festive. We never quit finished it. Last year it was decked out with garland and Christmas statues.

Saturday, December 3, 2011

Neurology appointment

We got back from AL early Thursday morning. I realized when I got home I had an appointment scheduled for 3pm on Thursday. Glad I didn't decide to stay another day. So, we took Jacob to St. Pete to the neurologist. We discussed how tight his muscles have been and how I am unsure about his seizures. The MD increased his seizure medication (Trileptal) a little and we discussed how hard it has been to find the generic of this medication in liquid. Generic is $10 name brand is $70. So we decide to switch him to the pill form in the generic since we have other pills we already crush and put through his g-tube anyway. We also upped his baclofen from 1/2 pill 3 times a day to a full pill 3 times a day. I am puzzled by this though. Just 13 days before I wasted about 4 hours of my time, a trip to Orlando, and a $35 co-pay for his Physical Medicine doctor to tell me he is already at his max dose and not to change anything. His neurologist assured me that he can go up to 3 pills a day instead of 3 1/2 pills.  I was also told to work him up to the 3 pills a day slowly and to stop if I noticed an improvement without going to 3 pills. So, we are starting off at 1/2,  1/2,  whole for 3 days, then whole, 1/2, whole. If he is still tight after those 6 days we will go to 3 whole pills a day.

Jacob has been really sick this past week and we have had lots of vomiting. I have held off on his blended diet for a few days and I am actually trying out the new formula Compleat Pediatric that came in the mail while we were gone. It is apparently made of "real food" and is the commercial brand of a "blenderized diet". So far he has vomited 2x since Thursday morning when I started giving it to him :-( I enjoy making his food and will probably stick with it. One day I hope to buy one of those really nice blenders so  I can use more fresh fruits and veggies and get away from using baby food to make his food.

Andrew has been a complete monster lately. I think his terrible 2s has went into full force. He has to levels Loud and LOUDER. The kid screams everything. He had me so frazzled tonight that while I was packing them up early to take to my sister's for the weekend that I forgot important items for Jacob and had to make a 2nd trip to meet her 1/2 way to give my sister the rest of his supplies. He has to be forced to eat anything that is not bread related, he craves attention none stop (I feel bad) anytime I am sitting he is sitting on me, if I am walking he is following me around standing in my way. If I am in the shower he is beating on the door, it I am on the toilet he is unrolling the toilet paper...etc...Wow I can only imagine this if all 3 of my triplets were alive and healthy like he is. I am thankful he has the ability to annoy the crap out of me though :-)

Ava is starting to have quite the weight issue. I am really concerned about how much weight she is gaining..again. She is about 12 pounds over weight. I feel bad denying her food that other kids are having, but she is 4 years old about to go into a kid's size 7! I have seen other kids make fun of her over he weight already and it breaks my heart seeing her follow down the same path I did when I was her age. I am trying to teach her right and wrong and what foods are better for her and how she needs to make healthy choices, but at the same time it is okay to have "the bad foods" sparingly and in moderation. Like tonight she was trying to eat a cup cake at bedtime at my sister house. I explained to her that she should not go to bed eating sweets, bad for her teeth, weight etc...she still really wanted it. I offered to cut it in 1/2 or 4ths and said she could eat the rest tomorrow. Finally after taking 1 bite and licking some frosting she told me she was going to save it for tomorrow and that she really only wanted the ring on top. Makes me proud to see her make that decision, but sad that she had to. I am trying hard not to bring bad foods into the house, but with other people in the house buying food as well it does not always happen. I caught her eating a chocolate donut that Christine bought hiding in the kitchen after she got home from school today. She LOVES food. She is always asking to taste everything. I think she finds pleasure in foods. She constantly tells me her tummy is still hungry after eating more than a normal size portion for a child. She cries and begs for more food and generally ends up taking her brother's food or eating off mine or Jack's plate. I am going to try to get her to drink a cup of water before she eats and I will do the same thing with her to see of this helps us both eat less. Am  I wrong to limit what she eats and to cut her off when she still begs for food? I really don't know what to do next.