Friday, August 27, 2010

Jacob's blindness

Just wanted to put a quick update on the boys. I know I have posted most of it in previous blogs, but for those who are not up to date hear is the latest.

1st off and most exciting was Jacob's eye doctor appointment at Light House For The Blind today. Their specialist as I said before had looked over his records before he even seen him from his last eye doctor. She documented that he was severely farsighted and said he had CVI. He questioned then why no one put glasses on him. He got to see him in person today and reviewed his chart again. Once again he was like why the hell didn't the last doctor put glasses on him. He told me he DOES NOT think that Jacob has CVI. He said the kid is severely farsighted, that he turns his eyes in to try and focus, but then if he does focus he probably sees double, so after trying to focus and not seeing anything he can deceiver his eyes have given up focusing unless stimulated (like things close to his face, lights etc). So his eyes were turning in and as soon as the doctor put the lens in front of him that will be equivalent to his glasses his eyes immediately aligned and he started kicking and smiling. This is exciting. I am not going to feel relief yet, who knows who is right. The glasses will be ready in 3-5 days and we will see what happens. The doctor said he probably has never discovered his hands or developed any coordination because he can't see without glasses and the CP on top does not help. He seems to think after a few weeks he will be a new baby. I am not holding my breath for a miracle. I will just trust in God that he allows the right people to fall into place for us to give Jacob the best chance at functioning and the best life he can have.

Another fun thing that has happened with Jacob is the physical therapist finally brought the walker/stander she has been teasing me with for months. The 1st time he was in it on Wednesday he made it move on his own. he took a few sporadic uncoordinated baby steps, but mostly moved both feet together kicked and made it glide across the floor. It was so cute everything he made it move he smiled and made noises. Today he was tired and was not so interested, but he did make some steps. I think it is a good thing. Finally something I can put him in that take the pressure off his head, back and butt all the time. The support is in just the right place that he can't arch back so far that he does a back bend. He still throws his head back, but corrects himself more. Right now he is flopping around like a fish in it. Not really doing anything. Its good for him to put some weight on his legs.

The Teeth update: Both boys equally have 6 teeth 4 across the top and 2 on the bottom. Andrew has caught up with Jacob nicely in the tooth department.

Andrew is still crawling all over the place. He still will not go from laying to sitting on his own. He does like to pull up on things . Mostly he pulls up to his knees but I have seen him pull up to his feet several times now. He is starting to babble mamamama and dadadadad more and correctly to whom he wants. Also he has heard NO so much lately I have heard him crawling down the hall going no no no no no no no LOL!!!

Jacob's speech therapist will be out for 2 months. She is going in for a big surgery on the 31st Please keep her in your prayers. God knows who she is. I don't want to give out her personal business, but her name is Julie. His last visits was this passed Wednesday. I have no one lined up to take over while she is out yet, hopefully we will find someone soon.

 It is hard to find a provider not through Early Steps (no one is picking him up for speech) because his medicaid is running out AGAIN at the end of the month. If we make ANY extra money our income is over the limit for SSI he gets $50 a month now.  I don't care about the $$$ but he has to have the SSI to get the medicaid. So when he does not qualify for SSI like the month of September he get no medicaid. Thank God I am able to keep private insurance on him, but still doesn't cover the HUGE co-pays and his huge prescription bill when you are already on a tight budget. All things will work out they always do. I have also tried to get him on CMS (Children's Medical Service) this is designed for kids who don't qualify for medicaid apparently, I have switched him to this before, but as soon as his SSI kicks back in it bumps the CMS then I am back at square one when they tell me I don't qualify. So I guess I just need to tell them I don't want the SSI :-( But medicaid does cover the best.

Ava had a good 2nd day of school on Thursday. She cried when she I dropped her off. It broke my heart :-( When I picked her up she was having fun playing with some kind of play foam stuff on the table with the other kids. She looks so cute with her little back pack and uniforms. Jack's parents have been a huge blessing helping pay for her school for now.

Light House has also been a blessing. We qualified for them to cover the cost of Jacob's glasses. The frames which I can only describe as big thick silly bands lol were $90 They are made out of flexible plastic that you can pull and twist and it goes back to its org shape like silly bands do. They have a piece of cotton at the back of them that looks like a Chinese finger trap that is meant to hold them on his face. They look silly and he looks silly in them, but that is what they use on babies and hey they are free and will help him. So no complaints hear.

It is pouring rain here and I have to get packed to go to my sister's house with the kids for the weekend. Time to start another lovely work weekend. Looking forward to my 5 days off. I really LOVE Mondays. The start of my days off and all my favorite shows come on :-) I think I finally know what I want to be when I grow up. I think I would really like to be a speech therapist. It requires a master's degree. One day. One day. Things will fall into place.

Jacob's 2nd time in the walker with his PT Eileen
Jacob in this new chair

Jacob before bed last night

Yes, this is what I found Andrew wearing when we picked him up from Aunt Tricia yesterday. Apparently I did not pack cloths for him and this is what she had on hand. I added Ava's bow for a nice touch. He makes a sweet little girl and looks like Ava. LOL

Ava ready for her 2nd day of pre-school

Andrew driving

I had a video of Jacob in his walker and it won't upload :-( So I guess this is all for now.

Wednesday, August 25, 2010

Ava's 1st day of Pre-K3. Jacob may have Pneumonia again....

Today was the big day. The morning started off bright and early at 7:10 AM ;-) Hook Jacob up for a tube feeding, Andrew ate in his high chair, woke Ava up bathed and got food for her, and finally got Ava dressed and ready for her first day of pre-school. Jack got home he change, loaded the kids in the van, and off we went at 8:08am LOL to take Ava to school. Ava was excited to go. We put the babies in the stroller and walked Ava to her class. She was a little shy at first with the teacher, but no crying, no begging me to stay, and no hiding under my shirt. :-) We dropped her off at 8:30. They have cameras in all the rooms, so we can go to the hall and watch her in class. Within minutes Ava was over playing with the other kids. She has come a long way with the "I'm afraid of kids" stuff. I picked her up from school at 2:30. I walked in on her during snack time. She looked so darn cute sitting in the little chairs with the other kids. This morning when I told her I was going to miss her. She tells me "It okay mommy, your going to be just fine." LOL I think she is really going to enjoy school. She did have a "potty accident" during nap time, but besides that she came back with a really good report from school. I'm so proud of my big girl.

She is laying next to me on the couch with her "slinkey" apparently this is the name for large fuzzy blankets in Ava language. I had to take her school blanket home to wash from her "potty accident" and she has been obsessed with it all day. She has another blanket just like it with Cinderella, but no she has to have the school slinkey to sleep with tonight. She actually took it out of the washing machine and would not let me dry it. She scolded me for forgetting her nap time pillow today as well.

I think the sicky is passing in the house finally. Jacob is almost back to normal with his feeds. He did run a fever on Saturday. I took him in to see the pediatrician. They did the whole pneumonia work-up again. He said he heard some slight crackles in the lower base of his right lung. I finally got the results from the radiologist today from the nurse. They did not compare the x-ray with the previous ones from the ER. When I looked at the x-ray it looked like all the other with the infiltrate in the right upper lobe. The lateral view the infiltrate looked a little more spread out than I remember. So the issue is, is this the same stuff that has been there for months vs. new aspiration or just more than before etc. Anyways it takes 3 months for infiltrate to clear from his lungs and it is hard to tell if it is old or new. I asked the pediatrician to refer us to a pulmonologist. So we have our 1st appt on the 31st. Jacob also goes to see the eye doctor on the 27th. I hope by next week we will have some answers for Jacob regarding his eyes and lungs :-)

All pictures were taken today. Andrew is so cute. The coffee table is Andrew new favorite spot. Ava was modeling her new fairy princess outfit for me. I took Ava to Olive Garden this afternoon to celebrate her first day of school and for her being such a good girl.

Monday, August 16, 2010

The Super Sicky Family

So we are going on 1 week of sickness now....Jacob was still eating until this weekend. My sister struggled to feed him all weekend, he also started vomiting/refluxing bad over the weekend. This morning he has eaten nothing by mouth. This is why I <3 his g-tube and I am very glad we decided to have it put in even though it was such a miserable experience. I'm sick, of course Jacob is, I think Ava and Andrew are starting to get over there sickness. Oh well, hopefully all will be well with the family soon.

Please keep Jacob's speech therapist Julie in your prayers. She will be out on medical leave for 2 months starting at the end of the month. She is going in to have a very serious, dangerous surgery done.

The King family continues to struggle with with Olivia's recovery. Her mom reports that she seems she is getting strong each day. She is still battling a very dangerous infection. There is talk of having to place stents in her liver, which are apparently very painful even after the surgery. Her diabetes is out of control. Her blood sugars are staying in the 4 and 500's at times and other times dropping extremely low. Please continue to keep this family in your prayers.

Still looking forward to the 27th when Jacob sees the eye doctor. I continue to desperately wait to have all 3 kids pictures taken. They are never well and uninjured at the same time. Everyone in our church is "fasting" something this week during their week of prayer. My sacrifice this week is fast food, take out, and sit down restaurants. This may seem simple, but for someone like me who gets what she wants when she wants it, it is agony. Just taking Jacob out of the house today to speech therapy and blood work all I could do is think about all the yummy places to eat. This will help our bank account too. :-) If I can make it the entire week, maybe I will try a 2nd week. I am trying to find ways to save money so we can afford Ava's school which starts next Tuesday.

Monday, August 9, 2010

1 year old check up

Today was VERY tiring! The morning started off bright and early at 7:20am. We went to WIC that took 2 hours. From WIC it was strait to Speech therapy. I then had just enough time to go home shower, bath the kids, and go to the pediatrician's office. That was 2 1/2 hours in their office. We all woke up sick this morning. We are all congested with a cough. I can no longer taste...this sucks. Ava is telling me right now that she "can't feel better" right now. Anyways this is how the doctor visit went.

Jacob is 19 lbs 1oz He is finally on the chart in the 3rd percentile. His height is 28.5 inches. the 7th percentile. Head is 40cm and still the 0 percentile He is being switched to pediasure. Nothing else new.

Andrew is 20lbs 2oz he is in the 9th percentile. Height is 29 inches He is in the 12th percentile his head is 45cm they did not right down the percent for him. He is being switched to the Next Step Formula until October then he will go to regular milk when he is technically "1". Andrew is doing most 9 month old appropriate things. We have to work on him sitting himself up and then pull up. Oh and trying to get him to say words.

Not a whole lot else is new. My head is spinning and hurting so I can't think of anything else productive to I will update again later.

I just realized something I might not have mentioned before...if I did you can read it again. When Jacob seen the vision therapist last Friday she told me she showed his records to the specialist that sees the kids in their program. According to her and considering the fact he has not seen him in person.  He read Dr. Ikeda's notes which mention he is far sided. The fact that Jacob crosses his eyes when you put things close to his face, and that he turns his head the opposite direction when you try to make eye contact are signs of being far sided. So, they seem to think he is severely far sided, not blind. Not that he doesn't have CVI, he very well might, but this gives me hope that maybe glasses will make him see better and that he may use his hands more. :-)

Thursday, August 5, 2010

Trying to get back in the swing of things

I'm almost afraid to report this. I don't want to jinx myself LOL The kids have been free of sicky for several weeks. Everyone is doing wonderful!!!!.

The teeth report: Jacob has 4 teeth that have broke through the gums on top and 2 on the bottom that are almost all the way in.
                         Andrew has 4 teeth through the gums the 2 next to the front I call the k9 teeth, vampire teeth lol  or whatever they are called you got the point. and his 2 center bottom teeth. His front teeth are not far behind. I expect they will be through the gum in the next week or 2.

Andrew is climbing everything, I guess you would not call it pulling up per say....he "crawls" up thing. Anything that is not ground level he climbs it with his hands until he is upright on his knees. He is mischievous, cranky, and short tempered. My sweet little quiet baby has been replaced with a mobile MONSTER LOL. He was a good baby but, I can see him being a very mischievous, selective hearing toddler. When he does not get his way he screams. When he does not want or like something he throws it on the floor. He demands attention now. He will sit at my feet and scream until I pick him up then he laughs and starts hitting my face. I love that little guy. I hope he starts saying some words soon.

Jacob is not doing anything huge, but his mood has been wonderful. He is bright eyed and full of laughs and smiles. He has been more alert and calm. He is feeding great. Finishes all his bottles. He has not been tube fed entire feedings in a long time. We do use his tube for his meds and I have pushed small boluses of food with a 60cc syringe to hold him over when I don't have time to feed him. Not full feeds and usually only a few ounces. Then he eats when we get where we are going. I will NEVER prop a bottle on him again. Last time I tried (which he had tolerated propped bottles in the past) he gagged and vomited while in the car seat and chocked on his vomit, inhaled it, and it came out of his nose. So NEVER again.  We are working on stage 2 baby food still. He still tongues it out when I put it in. Even if I force his mouth closed he will eventually get it out. HE LOVES NUK PACIFIERS NOW! SO, if I put the food in his mouth and shove the pacifier in after it he swallows the baby food while he sucks. He is holding the pacifier in his mouth for longer periods of times. I pray he stays well, maybe we will see some more progress. He is still set for HBOT in September.

Ava is starting pre-K3 on August 23rd. She is super excited. Potty training is going very well. She has went nearly 2 weeks with almost no accidents during the day except for when she naps and if we are in the car. She does likes to pee in her car seat. Today she took a long nap and did not pee her pants! I promised her that if she was potty trained by the time schools started I would let her go to school .She has been begging me for awhile to go. She will be going to Victory Christian Academy 2 days a week. OH MY IS IT EXPENSIVE! I called all over my area and all the prices were about the same some actually more than VCA. I like Victory I went there on and off for over 10 years. I have watched the church and school grow over the years and I have heard nothing but wonderful things about their programs. I think she will do well. Next year I will try to get her into St. Anthony's for VPK and then she will go to a public elementary unless something changes with our finances in a very positive way! I was so excited about sending her I went out today and bought almost everything she needs. I got her uniforms, mat, pillow and blanket. I also got her a small backpack. This will be great for when I am taking Jacob to St. Pete every day. One less kid to drag along with me.

My house is trashed! I can't keep up with the mess around here. It needs a DEEP clean. I went to clean Ava's room and I did not realize how NASTY it is. Dried nasty in the carpet. The walls are covers with toddler dirt and her "art work" and it kinda smells in there. There is dried baby food on my new area rug in the living room. The floors have a film of dirt. The walls and base board need to be scrubed. Heck, they need PAINT at this point! The kitchen and bathrooms are filthy. They need hours and hours of scrubbing. This stuff is literaly stuff that fell behind a year ago, that I have never totally caught up (referring to the walls, base boards, and Ava nasty landfill) Oh the upside, the laundry monster has almost been tamed, I have been doing well getting the kids cloths put away. I finally moved the boys cloths back to their room from mine. I could have moved them in February when Jen and Dahlon moved out, but never got around to it. Jack has been better about keeping our cloths put away. It is nice seeing the floor in my room again. Mt. Gunter has been abolished. Ava can no longer hide her dirty pull up that she takes off in the morning in my CLEAN laundry. Seriously, I don't know what is wrong with her sometimes. Why would you hide a pee diaper in cloths instead of throwing it in the trash is beyond me.....

We had a mini vactionMonday-Wednesday in Daytona Beach. It was great. We stayed at teh Sunviking Lodge. Jill, Eric, and their kids came with us. It was semi-relaxing and we had a lot of fun. I wanna plan atleast a 1 day trip for just me and Jack in a few weeks I want total silance and NO kids for just 1 day :-)

I have been following Barb King on facebook and her blog here on blogger for awhile now. Lots of people follow her, I think I was suggested to her page from someone else on facebook. Anyways, her daughter who has CF has been very very ill. She just had her 2nd liver transplant about 2 weeks ago. Reading her post on Facebook break my heart. It reminds me so much of the post I used to post about Logan. They have a very strong faith in God. Her daughter Olivia is not well. She has been back in surgery several times since the transplant. They have battled rejection and infection. She is I guess what you would call septic at this point. She has a very hard to fight bacteria in her blood and in her liver. They placed a stent in her bile duct the other day and drained a large abscess from her liver. She has a lot of people praying for her and her family. I'm sure a few more could not hurt. Olivia is out of the ICU. Barb's report this morning said she was doing better today, but Olivia flips flops back and forth just like Logan did. I only had 6 months and 12 days with Logan experiencing his ups and downs. This dear family have been battling 14 years with their daughter with her CF. They have been through a liver transplant before, I pray her body can hold strong and she can get thought this. It has to be awful to to be in the hospital with other children who are waiting on organs to live and get to know the families and then watch their children die. She has mention several other children that have not made it to either get their transplants or died withing 2 weeks after receiving it. I definitely know how see feels sitting on the edge of believing your child with thrive vs. death. I pray God has greater things for Olivia. Her and her family have touched many lives. My heart aches for them. I look forward every day to reading her updates. I will keep everyone up today on her progress until that little girl goes home. So long story short. If you feel lead please pray for the King family.