Tuesday, June 28, 2011

Physical Medicine Doctor Visit and New Meds

Today was Jacob's 1st appointment with the Physical Medicine doctor. I really liked her. She gave me 2 options for medications to help with his spasticity. The 1st medication is Valium (I did not know this was used for anything besides a sedative and anxiety medication). The 2nd is more common, baclofen. Because of Jacob's seizure history and the fact that I don't feel that his absent seizures are under control, baclofen was not the best option for us. She told me it works with the muscle tightness, but it tends to increase the occurrence of seizures. She said the Valium would help with the tight muscles and help control the seizures. The down fall is we wanted to get him off sedative medication....including the one he is currently on (klonipine). She really pushed the Valium though, so the plan for now is we are weening of the klonipine to once a day at bedtime...she said it will help him stay asleep at night. He currently takes the klonipine 3 times a day. So, we will be replacing the klonipine with Valium 2x a day. What is nice is that it will be in a liquid form, so I will have less pills to crush and now his afternoon meds will only be 2 medications instead of 3. We follow up in 2 months. She also said the next step would be botox in the tightest muscles if the Valium was not working good enough. I have a feeling he will end up with the botox in the back of this thighs. They are the worst. I have done a lot of research on botox and I am a little afraid of that too...but I guess every medication has it risks.

The 1st thing they did when they came in the room was offer to order a new piece of equipment for Jacob. LOL I think they must be getting a cut for everyone they refer...the person that created them is from Virgina and tha is where she is from. :-D It is still a neat concept and heck if I don't have to pay for it, what would it hurt....kinda wish I had this when he had the long tube hanging form him though it would have been perfect...so for all you parents out there with kids with g-tubes check this thing out. It is used to make sure the g-tube is safe...helps prevent little ones from pulling it out, contains long tubes, and help when your child is on the floor or in a piece of equipment that it can get caught on. I am going to call gis medical equipment person tomorrow and see if they can get the process going. I want it just for when Jacob is in his stander or gait trainer. The mickey button tends to get caught on trunk support. On more than one occasion I have seen the tube bent and ready to rip out.

Picture from the website
Click Here to see the website for this item. It is called a Benik G-Tube Protective Belt

Friday, June 24, 2011

I miss Him!

Do you ever miss someone so much you physically hurt? This is how I feel today. My entire body hurts. I hurt for Logan. I hurt for myself. I hurt for Christine today. I am watching her sit on the couch in tears talking on the phone making appointments to get help for her family. I am so proud of her for making this step. I don't know why things feels different today.  She got good news yesterday, but the atmosphere is just so heavy in this house today. Lord Help Us!

I miss you so very much sweet baby boy......

I'll never forget the feeling of the 1st time I ever held him <3
Christine's tumor did not grow. Praise God! Everything is still going as planned. She starts chemo on Monday. Blood work every 2 weeks. Next MRI in August. Please continue to pray for hee, her acceptance of her illness, and please pray for her husband and their MANY issues.

I love you Christine!

Wednesday, June 22, 2011

New equipment for Jacob

Today the physical theripist was here with a representaive from Custom Mobility to work on a order for Jacob's equipment. All of his current equipment is loaner stuff. Now that we have decided what he likes best it time for them to rape the insurance companies for 1000's of dollars. I am most excited about his wheel chair getting order, though it also feels like a punch in the stomach at the same time. Simple things that come unexpectedly trigger the verge of an anxity attack. Feels like the wind has been knocked from my stomach. This is how I felt this morning when the Custom Mobility guy was walking up the driveway. You would think this feeling would only come when you are reminded about your baby being gone, or when your triplets are called "twins" (kinda doesn't bother me anymore), etc...I except Logan being gone because nothing I do in this world will bring him back, but I don't think I will ever except Jacob's cerebral palsy. His issues will never be "fixed" but I do feel like if I had all the money in the world he would have 1000x chance of a better life. I wish so badly I could just have another baby and do stem cell treatment on him and do the intensive therapy sessions. I wish I could have a hyperbaric chamber for him. There are so many things that are out there to help him that are simply out of my reach. It kills me. So, I live in the things I can control which is raping the insurance to atleast get him all the equipment I can possibly make them pay for. So this is what we have on order now.
The wheel chair will look similar to this one. It is called a Quickie Zippie 2 I believe...some of the equipment will be a little different to adapt to Jacob's needs better. His chair color is black opal. It will have that glitter shimmer thing on the metal when it moves. I was told that the seat and back comes off so it will fold up small enough to fit inside my van.
The rest are stock photos I got off google of the other equipment he has at home as loaners, but this is what we are getting:

This is the Tumble Form 2 Stander. I really like it. He can stand as pictured here or flipped the other way. I like that it can be angled. He don't have the tray now, but he will be getting it when he has his own. I was told this tray is $800. That is crazy and I know the stander is $2000 give or take.

He already owns the tray to this...it look like the one that comes with the stander, just shorter. We ordered this in all blue.

This is his bath chair. They ordered this with a stand he will not be so low to the ground when  I bathe him.
After the 1st of the year we will work on getting him a rifton pacer again. He has one now, but it is just about to small for him. These are hard to get because they cost more than wheel chairs. Some times the therapist have to submit videos of them walking in them with purpose for insurance to pay for them. Jacob used to take some steps in it, but has not in a long time. I don't want to give up on him taking steps though. I had a mom tell me her kids stood in 1 for 5 years before he made it move with purpose.

Jacob seems like he is getting sick. He is now congested and coughing. He vomited twice yesterday. So far so good today, but he is only one his 2nd feed. I slowed them down and he will probably only have 3 feeds instead of 4.

Andrew and Ava are well. Neither are sick.

Ava went for her 4 year old check up yesterday. She is 40 inches tall and weighs 44lbs. She gained 12lbs this year when a normal child gains 6-8. I hope to get this under control this year. I really don't want her to be like my or her father, but I guess she learns from what we eat. :-/ She is healthy. She got her forms for school, but she is slightly behind for her age. This is like a knife in the heart for me. I used to feel like she was so "advanced" she walked so early. She could carry on a conversation and talk in complete sentences when she was 2. Everything pretty much went down hill when the babies came. I did not give her the extra attention and focus on things like I used to. So, I did spend $65 a week for the entire school year sending her to school part time to help with her social and learning skills this past year and I feel like it did little to nothing for her. She pretty much learned how to color. She counted to 6 for the doctor, but does not recognize the numbers. She sang her ABC's for her...omitting parts of the middle. This she could not do a few months ago. She has come a long way just by saying them. I don't think she has a learning problem just lack of stimulation. She does not recognize letters by name, but thanks to "The Letter Factory" DVD by Leap Frog she can tell you most of the sounds to the letters, just not the name of what letter it is. She also has developed some speech issues. Seems like she used to speak clearer, but now somethings are harder to understand. Like when she says "school" she say "sssdool" She also can't write any of the alphabet or her name and apparently she is suppose to do that too. Next year she has Voluntary Pre-Kindergarten Monday-Friday for 3 hours a day. Hopefully she will be "caught up" by the end of next year.

Christine and her family are do okay. They had a good vacation. Her daughter went to stay with her aunt for a month. This does not make Ava happy. So, it is just her, her husband, and her  2 boys here now. She goes for her MRI tomorrow to see if the tumor on her brain stem has grown or not. She has a bunch of doctor appointments tomorrow. Her feet have started to swell. This concerns me. They started doing it a few weeks ago, but I thought it was because she had been standing for a long time...really there is no reason for the swelling now. She is going to kill me for this, but she has put on quite a few pounds from the steroids, depression, etc. So I don't know if the water retention is her meds, vs. the weight she has put on. Things are starting to settle down around here. Hopefully the coming months will lead to some healthier eating habits for the entire family.

Please keep both our families in your prayers. God knows are needs. I trust in Him to keep our heads above water and lead us to where he wants us to be.

Monday, June 20, 2011

Jacob did something NEW!

I've totally been sitting in a chair in the living room with my cell phone set on the video mode waiting to see if Jacob would do something new again. Jack and I were just sitting in the living room trying to clean and yelling at the kids who walk...I noticed Jacob kicking and lifting his head up (he is laying on his back on the floor) then next thing you know right before our eyes he rolled himself over to his stomach and pulled his head and chest off the floor like he has been doing it forever. So, naturally we roll him back over to see if he will do it again...about 45 minutes has passed and nothing. He is laughing at us now because we have been staring at him for the entire time now. I think he just wanted to get out attention :-) Even if he never does it again...atleast he has achieved this milestone once. :-)

Sunday, June 19, 2011

Jacob Ugh!

I believe Jacob is on the verge of one of his illnesses again. My sister called me today worried about his breathing. I had her bring him down to the hospital where I work so I could have him looked at. I had another nurse look at him and 1 of the pediatricians listen to his lungs. I didn't want to have him seen in the ER for something silly, but I have become so used to him being sick, that sometimes I think I down play what is going on with him. Luckily we came to the determination that he did not need to be seen in the ER. His lungs sounded fairly good. He is just super congested which is causing him to mouth breath and use accessory muscles while breathing. He is also coughing a lot. No drainage...I don't think he has a cold or anything. I think I have made my decision to go a head and make an appointment to have his tonsils and adenoids removed...assuming the ENT is willing to do it. He has seen an ENT a few times for this...the next appointment is scheduled for the 8th of July I believe. I have called to see if we can get in sooner with no luck. I am undecided it I would rather wait for this appointment or call the 2nd ENT I have a referral to in St. Pete.

I know I have a lot of phone calls to make tomorrow. I have to call to set up occupational therapy for him. I have to set an appointment to have a renal ultrasound done. I don't know if I mentioned this during the post about Shriner's Hospital. They wanted him to have genetic testing done because of his skin tag and small head. She said that it common that when there is a skin tag, especially a large one, that it is common for their to be malformation of the kidneys...they might have done this in the NICU, but I don't know and I have no record of it...and don't plan to go back to that place and attempt to get records.
Okay I may need a list a this point of things to do tomorrow.
1. set up occupational therapy
2. schedule ultrasound
3. reschedule Endocrine doctor appointment that we missed a few weeks ago
4. reschedule Eye doctor appointment that we also missed a few weeks ago
5. make an appointment to have his blood work drawn...that I was suppose to do weeks ago as well
6. Call SSI and see what I can do about the 810.64 that we have been over payed..amazing how much $52 a month can add up over time.
7. call and make an appointment with the pediatrician

Back to Jacob being sick...so I ended up leaving work 4 hours early (like I can really afford that) because I was concerned about him and I had the stuff to take care of him better at home then my sister had at her house. So I took him home gave him breathing treatments, tried to suction his noses, and gave him some nasal drops. My sister said he was up all night long. He looked very tired. He did sleep for about 2 hours...then he woke up and vomited all over his bed while laying on his stomach. So now his congestion is amplified worse than it was before. He is coughing like he is ready to spit out a lung, and I am afraid to feed him. Hopefully I will get him to bed soon and asleep and I will start his next feed.

We had a pretty busy week planned. Plans will all depend on Jacob and how he behaves though.
Tomorrow will be full of making appointments and therapy. Tuesday I requested to work for 4 hours in the morning, but don't know if I got the shift yet. In the afternoon is Ava's 4 year old check up..we have plans to go to a little water park that is really cheap to get in after the doctors appointment..but this will depend on what is left in the bank. Wednesday we have therapy for a good part of the day...the last being over at 4pm. Thursday is PAY DAY YAY!!! I will be rich for about 5 seconds. :-) Some of my co-workers and myself plan to meet up at play center with the kids. Friday I plan go to Down Town Disney with the kids and a friend to see Cars 2. Then it will be back to work for the weekend. Hopefully without having to leave early. I bid on a few shifts trying to get a few extra dollars for the boys big birthday party in July. It is only 2 paychecks away :-)


So what a lovely freaking day I have had since I got off work. My sister calls me on my way home asking me to meet her half way from her house so she can show me Jacob's diaper. She thinks Jacob has blood in his poop. I met her and I think he is fine...he has a rash that is bleeding on his butt that apparently showed up this morning and I think that is what she is seeing...but I told her to keep monitoring him and keep me updated.

Then I come home and open the mail that reads that it is from SSI. I think just freaking great what kind of crap is in his envelope..there is never anything good. So long in behold is a 4 page letter stating NOTICE OF OVERPAYMENT. Yes, that is right...I got not only 1, but 2 of these letters. These bastards made me go in a few months ago with every paycheck stub since they started getting benefits when they came home from the hospital. Mind you it was only $52, but hell it helped...especially with all the work I missed for all of Jacob's misadventures. A few months ago they decided that we made to much money and no longer required any SSI benefits...I was also told that with the benefits they took the medicaid. I don't care about the SSI at all. Hey free money is nice and I do pay taxes too, but not needed. Medicaid is his secondary insurance. This we need and so far they HAVE NOT taken it away.  It would be very hard to provide for his needs without medicaid picking up what my private insurance does not pay.

Back to my rant! I get 2 letters today saying I owe the social security administration $405.32 for each child. Yes that would be $810.64 they I have been "over payed."

I'm really angry. I know that it is not the government's responsibility to support my family and children in anyway, but I also did not ask for what has happened to my family to happen. I did not ask for spontaneous triplets. I took no medication or did anything to make myself have multiples...hell I was drunk when they were conceived...LOL...give me a break it was New Years. :-)  I did not ask for Twin to Twin Transfusion to happen to my boys. I did not ask for my babies to be born at 28 weeks. I did not ask for my precious son to have to suffer for 6 months and 12 days to fight to live for him to die anyways! Jacob nor myself asked for him to have a devastating brain injury causing his quality of a normal life to be nearly zero! My son has to suffer every day of his life with his disability. My husband and myself have to alter our lives forever to care for him. There will probably never be an empty nest in my house. I'm trying to do the right thing for my children. I have not put Jacob in a group home. I get up every morning for his therapy. My husband and I give him all his medications and tube feedings, we clean his vomit, and do everything we can to give him everything in our means. We drive hours to doctors appointments nearly every week. We find ways to pay for equipment that is horribly over priced that insurance does not cover. We have to find a way to get a wheel chair van one day, which are also very expensive. Now, the little help we have received outside of the gift of having medicaid they want all the money back!!! My bank account is nearly empty and they just expect me to write a check out and pay them back!

I swear I am going to learn how to be just like everyone else! I try to be honest and do the right thing. I try and do what God wants me to do. Maybe Jack and I need to legally "separate" and say we live at different addresses...heck maybe I should just quit my job we can all get Medicaid. Shit maybe I will be a drug dealer and sell drugs to children. So  I can get my EBT card, have free food, free health insurance, maybe some section eight housing, in the mean time I will drive my Cadillac Escalade around and get some gold teeth and big shinny necklaces and rings. Then while I am at it I will just pawn all my children off on friends and family and just never pick them up. I'm so over all this shit.

Luckily money is not everything. Family is the most important thing. I would rather live in a tin shack eating Roman noodles for breakfast, lunch, and dinner, no car, riding my bicycle around with a train of children in wagons behind me than not have them at all. Even Jacob. I couldn't honestly say I would love for him to be just the way he is, but I want more for him. Honestly I wish I could with the lottery pay for stem cell therapy and his own hyperbaric chamber...but I would rather have him like he is than not have him at all.

So 2 big middle fingers to you SSI...you will no longer ruin my day...the letter says I can appeal and try to have my "overpayment" waived...so I'm sure on Monday I will have all kinds of hoops to jump though...hell I guess worse case they can just take it from my income tax return??? Who know.

Wednesday, June 15, 2011


Monday I went and seen Logan's grave. Ava and Brianna were with me. They were running though the cemetery checking to see if all the flowers were fake or not.  She was telling Bree all about "God" which is what she calls the cemetery. She is very confused. She knows Logan lives in Heaven where God lives...so she thinks since we visit Logan's grave that is where he "lives" so the cemetery is God/Heaven. I try to tell her this is just where his body is and that we come out to put flowers down in his memory, but he is in Heaven which is far far away, she just does not grasp that yet.

Christine left this afternoon with her family for their 5 night vacation she was given. I hope her and her husband get along and they really have a great time.

Holding hands checking all the flowers in the cemetery

Running back to Logan's headstone

Saturday, June 11, 2011

Shriner's Hospital and GI doctor visits

Yesterday we spent from 8am until 430pm including drive time bouncing around Tampa to doctor appointments.

We got to Shriner's at 9am. We seen a nurse practitioner. Jacob was 1st sent to x-ray. When the nurse came back in the room she said his spine was nice and strait still. His hips still look good and are in place where they should be. They fitted him for AFOs for his legs. They are going to be ready on July 8th. We are also getting an abduction pillow for his hips when they fit his AFOs. They talked to us about wheel chairs. We opted not to get one through them just yet. We have plans with his physical therapist for this..which reminds me I don't think I mentioned his equipment order with his physical therapist. My insurance apparently will cover up to a million dollars (this includes medical bills) with no co-pay and they cover 100%. Not sure how much they will approve...also medicaid (assuming it still work when it is ordered) will help pay for anything they might now pay for. So we will soon to have a stander on order, a feeder seat for him to sit, possibly a gait trainer, a bath seat, and his wheel chair. That is a crap load of money and equipment well over $10,000 so his insurance probably won't cover it all at one time. So he has a loaner stander...so the most important for me is the wheel chair and for him to have his own feeder seat. The gait trainer is the last thing I will have her order since he won't walk in it anyway...I really just want him to have this for the future. I met a mom at hyperbaric who said her son stood in his for 5 years before he started moving it across the room. Jacob has a follow-up in 6 months with the nurse practitioner. Oh and she referred him to see a geneticist for his "abnormal facial features" and large skin tag on his ear. They earliest appointment is at the end of August.

I am totally considering changing GI doctors. Basically they will do nothing for him regarding his vomiting except a g-j-tube. When I told them the doctors in Orlando automatically will do a nissen with a g-tube they acted like it was unheard of. They continue to tell me the g-j-tube is done before a nissen. On the other hand I hate to put him though that pain, but I am so tired of constantly worrying about when, if, or where he will vomit next. I am really scared he is really going hurt his lungs one day. Not sure if the erythromycin is working so great anymore...Jacob is starting to vomit again and he is starting to stay congested all the time again. Right now we have made it 2 1/2 days without vomiting. I really need to sleep and pray on this. That God guide me in the right direction for him. Jack is totally against the nissen too.

I went and seen my friend Karen and her son Patrick at Arnold Palmer today. Her son had a nissen and g-tube placed on Thursday..or was it Friday...anyways he is doing well now after an initial very bad time in recovery. I worry how Jacob will handle having a major abdominal surgery. Today was the 1st time I went and visited anyone at APH/WPH since Logan died. I been in the lobby a few times but never beyond that since then. This is a little story I wrote on facebook earlier. This happened while checking in to go see them:

Patrick sees a Physiatrist . I believe this is the same thing as a physical medicine doctor. Jacob has an appointment with a physical medicine doctor in Tampa in late July...but Karen told the MD she goes to about Jacob. She was interested in seeing him. She deals solely with spasticity. She comes highly recommended by Karen, so I think I will make an appointment with this lady instead of the Dr. in Tampa. I was told the Orlando doctor could get me in within a week or two. She is new so it is easier to get in to see her.

I decided I need to make a folder just for Jacob with all his doctors, names, phone numbers, medications, appointments, hospitalizations etc. This I will be working on next week.

One last thing. We have a new home health care agency we are trying to get care through .She needs all the stuff listed above so I guess it will give me more motivation to get it done. She feels if we can paint a better picture about how medically frail he is that they may stop denying us.

So here was an ackward moment..luckily my brain does not process things very fast or it would have been worse. I go visit Karen and Patrick at Arnold Palmer today. They have the people that check you in an take your picture at the desk before you go to patients rooms. I walked up to the counter and the lady that was th...ere totally recognized me and rememebered my name. I remember her because she had been pregnant, delivered a baby and came back to work all in the time Logan was in the NICU. I started to tell her my name and she was already pulling me up...my name and picture are still in the computer from my very last time at WPH (Arnold Palmer for Children and Winnie Palmer where Logan was in the NICU are attached together) almost a 1 1/2 years ago. She thought that my son was the patient. She thought I was going to see Logan. I explained to her I was going to see a friend and her son. She says "How is the baby?" Me not realizing who she was talking about, "Oh they are great." Her, "That's good atleast he is not admited to the hospital anymore." That is when I realized who she was talking about. She had no clue that the last time I walked out the doors of WPH, I was not taking my 6 month 12 day old child home with me. It really did not totally hit me until I got to Patrick's room. Sadly I feel good that she was accidently mislead and that in that lady's mind all is well. Hmm just thought that was weird the lady would remember me from almost 1 1/2 years ago. Had a nice visit with Karen and Patrick.

Thursday, June 9, 2011

My Baby is 4!

Been a busy week full of birthday celebration and the usual Gunter tradition...sickness. Everyone in the family has had some form of a very painful stomach bug since last week. Still hurts to eat. Ugh! Need to post some pictures from Ava's party soon...maybe tomorrow.

Monday was Ava's actual birthday. My friend Jill kept the boys for me so we could spend the day just with Ava. We took her to Disney's Hollywood Studios. She road her 1st "real" ride. She is finally tall enough to ride the big kid rides...so what better to put her on than "Tower of Terror" LOL She did very well...didn't even freak out. She was scared, but when it was over no tears. The rest of the day was spent meeting characters and having lunch. She met 2 of the Little Einstein characters. She seen Handy Manny and Winnie the Pooh. We waited in line for her to see Mickey Mouse. She seen Minnie mouse and 2 Chipmunks. We seem the Disney Junior Show and she met Phineas and Ferb. We were only there for about 5 hours. We had to leave to get the boys by 430. She really enjoyed herself...now our Disney passes are block out until August 18. :-(

Tuesday was Ava's birthday party. Her party was at Back Yard Adventure. She loves that place. She wore her Hello Kitty outfit and enjoyed her Hello Kitty cupcakes.  The party was a success. There was 5 or 6 families there totaling 20 kids all together.  She scored big on presents thanks to Grandma Linda and Grandpa Jerry. She got cloths, so Hello Kitty stuff, My Little Pony things, and an arts and craft case.

Jack got really sick on Wednesday. He got the stuff that kept me in bed all day last Friday. His stomach pain was so bad, he actually went to the ER...couldn't get into his doctor. He came home with 7 medications and was diagnosed with gastro-enteritis.  He slept for the rest of the day. By Wednesday night, my stomach decided was time for round 2 of nausea, vomit, and diarrhea too. YAY! :-/ BTW from being ill over a week I am down 8lbs...sad to say I am sure it is all water weight and not fat LOL. At bedtime Andrew decided to join the fun and vomit everywhere. This morning was spent cleaning vomit and poop from the babies...nice visual huh?

Today was also Ava's last day of Pre-K 3. Very sad. I loved the school she was at, just can't afford to send here there full time next year, so we are opting for the free VPK that is 3 hours a day Monday-Friday. Didn't get much done today due to the above described illness. Ava decided she would vomit all over the car on the way home. Andrew decided he would shit all over his car seat on the way home...so me being to sick to clean it has left it there for now...Anyone up for cleaning a very nasy van? LOL So tomorrow we will NOT be taking the van to Jacob's appts. On that note, Jacob has 2 appointments tomorrow. 1. He has a long awaited appointment at Shriner's Hospital for them to evaluate his legs and possibly splints. 2. He has a follow up GI appointment. Jacob has been vomiting almost daily again over the past few weeks...their answer is always continuous feeds...I am tired of the answer because if Jacob is going to vomit, he does it on and off continuous feeds. GRRR! I am ready for this vomiting to be over...I think I am ready to give in to him getting a nissen.

Though all this sickness I did get a wild hair up my butt today and decided to get my pool up to par...Christine is having her daughter's 4th birthday here on Sunday. So I do believe I might have successfully patched a hole at the bottom of the pool causing 3/4 of the water to drain from it in the past week and I woke up and decided to buy a new ladder. Thank you very much Jack for you hard earned overtime allowing this pool improvement :-P

Christine was off her steroids for a few days. She became very swollen and started to retain a lot of fluid. She did not take the steroids for 4 days because she was tired of gaining weight etc...we I guess we all learned how important they are. She got really sick, swollen, and had very bad headaches. She still complains of a lot of head pain, but seems to be doing better. She is depressed, broke, and she is not doing very well with her husband. Please pray for them, for their relationship, her children, their finances etc. She has a lot on her plate right now. They have a little vacation coming up that was gifted to them through a foundation complete with a free hotel stay and free amusement park passes. They also assist a little with spending money and food vouchers. How freaking awesome is this. She will FINALLY get her fun vacation with her kids. They are going to Universal Studios and Sea World. They leave on Wednesday. She is having a lot of anxiety about it...afraid she will get sick, not have enough money etc. I am praying they have the best time of their lives. God Blessed them with this trip and I hope it becomes a true blessing to them.

My friend Karen has 2 surviving triplets like I do...she has 3 boys like me. Her boys also suffered from Twin to Twin Transfusion. She lives about 45 minutes from me. Not often you will find someone so close that has been though the same thing as you. He son Patrick also has cerebral palsy. He is much higher functioning than Jacob, but never the less they struggle with CP among other health issues. Her boys are nearly 3 and today they had to make the very hard decision regarding her son's respiratory and feeding issues. He had a nissen and g-tube placed today. This is a big surgery and he will spend a week in the hospital. Logan had it done with his g-tube and I seriously did not realize what a big deal it was. Jacob REALLY needs it done. Anyways, Patrick came out of the surgery okay, but 15 minutes or so into his recovery, his heart stopped beating not once, but twice. Sadly this is not the 1st time this little boy has needed CPR. He is in the ICU now and is stable. Not sure what caused this, maybe the sedation? Anyways, I just asked you pray for this family as well. That the coming day bring healing and that his mother NEVER has to face the near death, much less the death of another child. It was a sweet thought, someone posted a comment to her facebook that he went to visit his brother Hunter in heaven and Hunter sent him back to be with his family <3 <3 <3 He is such a sweet boy. Jacob and him have therapy together every other Friday. I pray God has great things in stored for this little boy.

Will update more tomorrow after the doctor appointments. It is nap time. :-)