HBOT date is set

We have an offical date for Jacob to have his HBOT. We start September 7th. Monday-Friday for 60 dives. Ugh this is going to take a lot of gas and time. It is worth it though even if it makes the smallest difference. I am willing to try anything no matter what I have to do to give Jacob the best chance of any function possible with his brain injury.

He was suppose to go tomorrow morning to have the skin tag on his ear removed. He was coughing a little on Monday with his normal congestion. I decided since he just got over another major sicky it was not worth the risk of setting him back anymore by putting him under more anesthesia for a vanity issue. I will wait a while to do it. When I initially scheduled to have it removed, I did not realize they were going to do it in the hospital under general anesthesia IT IS JUST A FREAKING SKIN TAG ON HIS EAR. Geeeezzz! Once he is 2 they can do it at the surgery center. Don't know if I will wait that long.....maybe I will who knows. I think I need to wait until he has been consistently well for more than a few weeks at a time.

Nothing new is happening. Jacob is feeding a little better than the last few weeks. I tried baby food with him fore the 1st time in a week or more and he spit it out and cried. Andrew is still a fat little baby developing an attitude problem. He has been throwing things when he does not want them.

My good friend Jill is keeping the boys Monday and Tuesday next week so we can have a mini vacation in Daytona with Ava and my friend Jennifer and her son Josh. I am SOOOO LOOKING FORWARD TO IT!

I finally made the "baby book"

I just finished editing and ordering my very expensive "baby book" I have been working on it for a month or so making it all fit just right. The first 131 post and 531 pictures have been compiled into "Mother of a Toddler and Triplets" the book by Jennifer Gunter LOL I found a coupon online that took $9.99 off so It only cost like $50 to make instead of $60. I was going to have 3 printed then I changed my mind to 1. LOL If I really lik the hardcovered printed version I will keep that for me and have 2 more paperback copies made.

http://www.blurb.com/bookstore/invited/959434/08fec376ea1bd648e4309263d711ff87?ce=blurb_ew&utm_source=widget

Jacob seems to be doing better since yesterday. We stopped the tube feeds yesterday morning and he has been eating by mouth ever since. He is not eating as much as he should be, but I am just going to let him work himself back up. No vomiting since Monday or was it Tuesday morning I can't remember, but I think it was Monday. He seen the vision therapist yesterday as well. She said she thinks he is definantly atleast seeing light. She gave me one of those toys that has the lights that spin around and make different designs etc. When you put it in his face he stops what he is doing looks at it then his eyes cross in LOL. I could not help myself I continued to show him the toy all night. The thing hurts my eyes when I look at it to long. I'm glad he does not have seizures from flashing lights... I was excited that he does NOT live in a black world with no light. I'm begining to except this new handicap. I continue to hope it improves over time. The lady that will be seeing him has never had a CVI baby or a CP baby...so this should be interesting. She is suppose to get me and herself more info on CVI. He is suppose to see the eye doctor that will assess his vision again in mid-August. Jacob is still on the Cleocin and it is tearing his butt up! I feel so bad for him no amount of diaper rash cream and powder is a match for his acid poop.

Andrew and Ava have been asleep for several hours...this could be very bad. It is 9:17 at night and this when i ususally put them to bed. I think this will be a very long night when Ava is ready to party at 11pm. She is sleeping on my couch with no diaper...I have a feeling there will be a wet surprise when she get up. Dang it! Jack just clean the couches Monday morning before the party.

I don't know if I mentioned it previously but both boys have 4 teeth. They have the bottom 2 middle teeth and the tips of the top K-9 teeth are coming in on both babies. This is weird I thought they were suppose to get their front teeth next. Oh well. I'm glad things are looking up in the past 2 days. I also do not know if I have mentioned signing up at the YMCA. I have a goal over the next few weeks to get organized and have a schedule that includes exercise. I want to schedule some of the exercise classess they offer every week just like I do all Jacob's Therapy. Next week the boys pediatrician will be back from vacation, so I will get to schedule their 1 year old check ups. I think that is all for now. I am home with the kids tonight while Jack works. His foot still hurts from trying to climb the water slide and falling. It is sad I still find this amusing...even though he is truely hurt..I have been working in the ER to long.

We had a wonderful Birthday Party

Today was a busy day. I spent the morning driving around, spending money, and getting everything we needed for the party. I was think about this past year while I was driving place to place. The hospital stay for me, Ronald McDonald House, NICU, Jacob's diagnoses, Andrew and Jacob coming home, all the ups and downs with Logan, and how our church, friends, family, and the community came together to support us with the loss of Logan. Then I was almost immediately brought to tears while I drove, not because Logan is not here and not because Jacob has CP, but the person who paid for Logan's funeral came to my mind. God always provided for us. Friends and co-workers were always slipping money into our hands. Co-workers at my job did a lot of little money raising things for us. Jack's co-workers took up several donations through the 7 months between my hospitalization to Logan's death. Then not to mention all the cards and gifts of money to Logan's memorial fund and what we got in the mail. Over the 7 months it all added up to approximately $2000 or more in gifts. This allowed us to never fall behind on our bills, always have gas and food, and then paid for part of the expensive of Logan's headstone. Then it truly hit me the awesome gift that a very generous person did for my family. Who ever it was spent nearly $5000 out of their own pocket to pay for the burial of a little boy they did not know. If the story of the widow who lost his wife is true or not, I will never know, all I know is that without the generosity of this person God sent to use to take on this debt Logan would probably not got the funeral we wanted for him. As I wrote in the blogs when he died. The day of his viewing we had no clue how we were going to pay, I had collected every credit card I had and called and got the available credit on each one and I was willing to max every single one out. Thanks to God providing for us we did not have to do this. This long ramble is to get me to my point of amazement all these months later. It was just God reminding me today. That HE takes care of my needs and that HE will take care of my childrens' and my husband's needs as well. No matter how much money is in the bank, or what we are going through. HE WILL PROVIDE. Our little testimony of faith is just a drop in the bucket of what God does for his people. Without people willing to sacrifice for the good of others where would we be? I don't know if the person who paid for Logan's funeral or all the people that supported us financially and emotionally will ever know what a miracle and blessing they  are to our lives. I'm am the worse person ever when it comes to thank you notes, I'm sorry I never wrote them, but for all who this blog reaches I am truly grateful.

Thanks to my sister Tricia for making it possible for us to have a SUPER AWESOME celebration of my children's birth. We were able to rent a 18 foot water slide which was huge hit with the kids at the party and some of the kids in my neighborhood. We had a sprinkler and a small kiddy pool for the little ones. We cooked 104 hot dogs. My sister brought over the side items which were super yummy. All I know is the kids had a blast and I heard from several of them that Andrew and Jacob's party was the best party ever! LOL Thanks to everyone who came to celebrate with us. Thanks for all the gifts. Andrew and Jacob love their new toys and cloths! I have a challenge in the future if today was the best party ever, I must out do it next year LOL

I pray that their 2nd year is full of accomplishments and HEALTH! I hope they continue to thrive. I pray the blessing for Jacob and Andrew overflow. This time next year I hope they are both mobile and ready to play at next years best party ever  :-D



Psalm 100


Shout for joy to the LORD, all the earth.
Worship the LORD with gladness;
come before him with joyful songs.
Know that the LORD is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the LORD is good and his love endures forever;
his faithfulness continues through all generations.



1 Thessalonians 5:18

Give thanks in all circumstances, for this is God's will for you in Christ Jesus.

 
 
 

 

Happy 1st Birthday Boys!

Today was a bitter sweet day. I stayed home from work because I knew I would have been a mess if I would have went. Jacob was up through out the night sick. I have continued to keep him on continuous feeds and not feed him by mouth. He gags if you put ANYTHING in his mouth. I'm not quite sure he is on the right antibiotic. He is coughing up green and I got a glimpse in this throat while giving him a bath earlier and his tonsils are still HUGE and angry looking. Several doctors have looked in his throat over the past week and no one seem to be concerned....anyways back today.

We all pretty much napped till 11am. I mowed the yard to get ready for the party tomorrow. Jack worked last night so he slept for a while. We got the kids dressed, fed, and went out the door. We stopped by the craft store to pick up new flowers for Logan's headstone. Jack went into the Dollar Tree and got some happy birthday balloons for him. Then we went to Subway to grab some lunch. We went to Logan's grave cleaned his headstone, put in his new flowers, and laid a blanket down next to where he is buried. This was the 1st time we got all the kids out of the car when we go visit his grave. We decorated his headstone for his birthday and we all sat on the blanket and had lunch to celebrate the birth of all 3 of our boys. I know Logan spirt it not on Earth with us anymore, but having a picnic lunch in a grave yard where are son is buried is the closest we could get everyone being together on their birthday...some may find this weird, but it helped us cope.

The rest of the day was spent clean the house while Jack slept and taking care of kids. Jack is at work again now and I finally got all 3 kids in bed. I am so tired I think I will just set the alarm early tomorrow to clean. Tomorrow should be go, don't know if we will have 15 people at our house or 50. I pray the guy that I am renting the water slide from shows up. We plan to have an 18 foot blow up water slide, a kiddie pool, and of course the big pool for the guest. I have a total of 104 hot dogs. In the morning I have to pick up the cake, hot dog buns, and some side items. The party starts at 3. Hopefully I will get to post the pictures of their 1st birthday party tomorrow night, then I can work on making my book of their 1st year. I'm excited to see how it turns out.

Here are some pictures of today's events:

The last picture is just random cuteness from Ava LOL I love the boots and so does she!

Ava has a monster hand and Jacob's monthly ER visit

The past few days have been CRAZY. All the kids are still SICK. I seriously need bubbles for them. Jacob was so sick on Saturday night he could not eat by mouth without gagging. He ended up with mostly g-tube feeding though the weekend. Saturday night he vomited A LOT! He also vomited Sunday and Monday. He seen the pediatrician on Monday. She put him on an antibiotic and suggested I not feed him by mouth for 2 more days. He was wheezing and very congested. Tuesday night after I finished his g-tube feed he had the most scary vomiting episode. It was about 20 minutes after his feed and he was sitting in his high chair. He was very spastic on Tuesday. He had a lot of arching and seemingly uncontrolled music. His gums were swollen and he has not cute the tip of both K9 teeth. Anyways he was keeping his head arched back alot and I heard him gagging. I just up to find vomit coming out the side of his mouth with his head back. I fling him forward he inhales deep, gags and then vomits across the room. My heart was pounding I was sure he had just aspirated vomit into his lungs and was just waiting for him to go into distress. He coughed for 10 minutes pretty hard, but seemed fine. I called the GI doctor just to ask if I was doing something wrong he was not vomiting when I was feeding him with a bottle, but now suddenly g-tube feedings he is vomiting? She told me to slow his feeding over 2 or 3 hours or just do continuous feeds. I chose to put him on continuous feed at 40cc hr per the MD. 1 1/2 later he was vomiting again. GI doc told me if he vomited again to take him to ER. So I called my sister she came to watch the kids. Jack left work. Long story short their, we got to the ER at 11 and left around 3am. He did have another infiltrate in the right upper lobe. Once again they were not sure if this was a pneumonia or bronchitis. NO fever, NO elevated white blood cell count, NO oxygen saturation drops he stayed 98-100%, No urine issues. NO wheezing! SO this is wonderful, but because he had been sick over a week and he did have the spot in his lungs they are treating him as if he has pneumonia and they changed his antibiotic. Like a magic wand...NO vomiting since I left for the ER. He has been gagging still, but seems to be doing a little better.

I started feeding him by mouth again today. He finished a 8oz bottle for me this morning. He was in a good mood and actually ate baby food from a SPOON! He actually did not fight me and he swallowed it for the most part and did not tongue it out of his mouth.

Now for Ava and THE MONSTER HAND. After being up till near 4am with Jacob we wake up and Ava tells me her hand is hurting. I glance at it and tell her its fine, then she like look mom. I take a second look and I like HOLEY CRAP! Her hand was HUGE. I called the doctor, had to make a follow up appt for Jacob anyway. They said they wanted to see her. A few hours late we sat in the doctors office by now she is swollen to her elbow. I can't even describe how Swollen it was..I did take pictures, but don't have time to load them right now. The doctor is shocked when she sees it. No sign of a bite and no sign of trauma. They send us to get it x-rayed just in case...they were normal. They send us home to elevate it, Ice it, and give her Claratin and Zyrtec. By the end of the day she had developed his HUGE blistered between her 2nd and 3rd finger. I went on a midnight run to Wal-mart with my sister and Ava joined use, because she had taken a 3 hour nap earlier that day. My sister looks at the blister and said she thinks she got stung between her finger. There was this little brown thing that looked like a splinter inside the blister. I've never been stung and had a stinger left so I had no idea! My sister takes it upon herself to pop the blister with the idea it would help get rid of the venom. I guess that did the trick. When I came home and put her to bed, I woke up this morning and her hand was half the size it was before she went to bed. She had a follow up today and they said they don't think she needs anymore meds or ice. It is still swollen but she can move her fingers again.

Well I am off to my 1st Zumba class now I will post some pictures later.

Jacob's 1st Hair Cut

Preparing for the upcoming photo session I am hoping to have with the boys and Ava, I decided to have Jacob's hair cut. He did very well. His hair was cut on Friday, July 9, 2010 :-) He is also cutting his top left K9 tooth. He is still sick and has required tube feeding for every feeding for the past 4 days. I took him to see his pediatrician today. She said he is wheezing and is putting him on antibiotics again due to his congestion and wheezing. Andrew and Ava are also still sick.

Before the cutBefore the cutDuring the cutThe finished productWhat a cute boy with his new hair cut!

Jacob also seen the facial surgeon today regarding his skin tag on his right ear. He goes on July 28th to have it removed. I was shocked when he told me he had to go under anesthesia to have it taken off and be admitted to the hospital for same day surgery. WOW! I thought they would numb it and remove it in the office like the dermatologist does the HUGE moles that grow on my scalp.

That is pretty much the biggest things going on. Andrew is doing wonderful crawling and entertaining himself. He is starting to feed himself table food instead of pureed baby food.

Ava is on week 2 of no diapers at all during today. She has been doing wonderful until today. She has not used the toilet once today to the point when we were in public after the 2nd time she peed in an hour I put a size 3 baby diaper on her butt. Then she comes home and pees in the house and pooped in the bath tub!

Jack and I have been fighting A LOT over the passed week. Apparently he does not understand how I feel and he don't think he talks to me in any disrespectful way..and he thinks the same about me. So we have been at each others throats the past few days. He is back in his miserable "Nobody loves me, everybody hates me" mood because he is on night shift I suppose and once again who gets the brunt of his anger and stupidity ME! I am SO very tired of his mood swings and negativity I actually thought of a plan for leaving him today. Though the thoughts of separating have been more frequent than ever, I feel like I can't give up hope on our marriage yet. Him seeing a psychiatrist is my last hope. If I endure another 6 months of this shit me and the kids are gone. He keeps telling me I am not taking HIS kids and that if I am going to leave the kids are not going. WRONG! How the hell does he think he will care for the kids and work. What is he going to quit his job? Ugh I am getting pissed just think about it. I guess Jacob would starve or he would be dependent on g-tube feedings since he can never get him to eat. Is he going to be home for all Jacob's physical therapy, Dr. appts, speech therapy appts etc.. NO! I am the one who has a job that makes it capable for me to work and care for his special needs. I would never deny him his children, but he pisses me off that apparently I don't deserve the right to have my kids if I leave him! If we separated I would let him have the kids every day he was off if he wanted. He could have them before he went to work if he wanted. I'm just sick of him trying to control every aspect of my life and the "violations" If I don't want to do something at the same time he does it is a "violation" If I am in his presence and on the computer it is a "violation" Talking on the phone cell phone or house on his days off or before he goes to work it is a "violation" The house not being exactly how he left it before he went to work even though there are 3 kids here and I get tired too after having them 24 hrs a day 5 days a week is a "violation" ETC nothing is ever good enough unless I am spending every free moment cleaning the house and not spending money. The way I dress is not good enough, my hair is not good enough etc....Now when he reads this I will get bitched at again that I am "husband bashing him" and that none of this is true. By no means and I an angel, but damn I know I am not as hard on him as he is me! Okay my venting is over.

I even caught crap today about signing up for YMCA to try to make our lives better. To get us out of the house, to get us away from the kids for an hour, to relieve stress, to help make us healthier. In his eyes it is all about the money and of course they purposely don't have the kid care hours when he wants them to be, just because of him apparently. Ugh I'm done now. My happy blog turned into a bitchy blog oh well. At least their is cute pics of Jacob's hair cut.

I caught Ava doing this and she was screaming for me not to take her pictureThis is from Ava's photo session she did of Andrew LOL She has fingers in almost every picture she took.

Jack is getting an award

Just a few quick updates. 1st off apparently Jack is going to be officer of the year for Lake County. Not sure if this is for the entire county or just his department. He gets his award on the 16th of July. I'm proud of him. He had a rough year and stood strong the entire time. He worked to support his family even though our lives were turned upside down. I love him...even though he is still crazy :-)

Jacob will now see physical therapy 2x a week Speech therapy 2x a week, Early interventionist 2x a week and Vision therapist for at least 1x a week. We are going to do hyperberic oxygen therapy the entire months of September and October

Andrew is going to start seeing the Early Interventionist 1x a week to help him catch up better

 We are going to see a Vision Specialist doctor in the up coming weeks to see how much vision Jacob does or does not have.

Potty Training with Ava is going well. I just stopped buying diapers. We are going on almost a week now. She has had good and bad day. Today she has only had 1 accident.

All the kids are sick. Andrew and Ava are mid-sickness they have had cold symptoms for a week or so
Jacob is not coughing and congested. He doesn't want to eat. I have used the g-tube more in 2 days than I have since he had it placed. :-( He is cutting a top k9 tooth though. His gums are sore.

I clean out the baby cage last night. It is mobile baby proof now and Andrew has quite enjoyed crawling around in the cage to day playing with his toys. Will post pictures of the beast in his cage later lol

That's all for now

Andrew Crawls!

Andrew has been making a few short little spurt across the room for a week or more. Thursday he really started to get a little more coordinated with his arms and legs working together. Over the weekend he got really good at it... :-) I am so proud of my 28 week preemie! Now he just needs to learn how to sit up all the time unassisted :-) One step at a time. One day Jacob will get one of these posts as well. I will never loose hope that he will be mobile! Hope every one had a happy safe July 4th.

Jacob's diagnoses

We went to the neurologist today. She spent a good 45 minutes in the room with us. It took everything in me not to burst into tears when I asked her what I already know. I asked her after she finished Jacob's exam, "When do you officially diagnoses him with cerebral palsy." She told me that she could now because she had all his test results in. She babbled off this long diagnoses in her accent. After 3 times asking her, I asked her to just write it done. So this is it: Spastic quadriplegic cerebral palsy with superimposed right hemiplegia. So to put this in non-medical terms here goes: Spastic mean he has decreased motor control (he can not control what he is doing) quadriplegic meaning it affects both legs and arms. cerebral palsy meaning his brain damage contributing to his disability and his stiff muscles right hemiplegia means he has weakness on his right side. I used to think his left side was the more affected side he seemed so much tighter on that side, but now it makes sense. that why he has to have his head to the left when he eats because his muscles are weaker on the right which was causing his aspiration. She stayed optimistic about his outcome. I got the answer I keep getting. We won't really know until he is "school age" regarding his intellect, IQ, etc. She told me I am doing the right thing with his muscles. She said usually babies with quadriplegic CP usually have less movement than he does and already have contractures. Jacob does NOT have contractures and he moves his arms and legs with a pretty good range of motion. He is horribly tight esp on his left leg. I am concerned he is getting the beginning of a contracture but I constantly stretch him. This is the information  I pulled of the internet about quad CP:
Spastic quadriplegia (all four limbs affected equally). People with spastic quadriplegia are the least likely to be able to walk, or if they can, to want to walk, because their muscles are too tight and it is too much effort to do so. Some children with quadriplegia also have hemiparetic tremors, an uncontrollable shaking that affects the limbs on one side of the body and impairs normal movement.

Jacob has the tremors in his left leg, it does not happen often and only lasts a few seconds. I will not give up on Jacob being able to walk, sit, etc. I worry about his physical development, but I worry most about his ability to communicate and see. As I wrote in my last post the eye doctor does not think he can see well. I can handle him being in a wheelchair if this God's will for him, I do hurt thinking about him not seeing and not being able to communicate as well. I do know he is happy and I do everything I can to make his life the best it can be for him. It is just really hard for someone to actually tell you what you already know.

I do know that God does have a plan and I am slowly understanding parts of his plan. For example I do believe Logan's life was meaningful and I know God knew I would not be able to give Jacob all the attention he needs and still be able to take care of Ava and Andrew if I was having to worry about Logan's sick lungs and his development as well. Not to mention all the extra doctor appointments, hospitalizations, and special equipment he would have needed.  Why God chose to take Logan with a normal brain and give me Jacob to care for I do not know. I do not wish it was different. I wish I had 4 healthy children, but I continue to follow God and believe his plan is perfect even though I sit her and think why is this happening to my family? Why does Jacob have to live his life this way? Why did Logan have to have chronic lungs while his brothers did not? Keeping the faith. Trying no to question God and go with the flow even though I have had a  really hard time with this in the last few months. God works miracles everyday. All 3 boys are my miracles. All I want is for Jacob to be able to tell his and his brother's story himself one day walking or not.

Andrew also seen the neurologist today. We went over his MRI results. She said all his brain matter is normal and the only things that continues to show is that he has enlarge ventricle. She said this could have been caused from a tiny brain bleed from his prematurity, but since it did not affect his brain tissue there is nothing to worry about. He was happy with his developement and told me she did not need to see him for a year. Jacob goes back in 5 months. Only change for him is an increase in his phenobarb for his weight. We will continue to put one foot in front of the other. We will continue therapy and start new therapy for his eyes soon.

My mind is exausted. Going to to feed and bath babies and go to bed before 1am hopefully.