Saturday, April 23, 2011

Lots of Doctors

This past week has been full of doctors appointment Thank God medicaid is good till the end of the month..Whoa that would have been a lot of $35 co pays :-/

1st off Jacob broke a 20 day record of not vomiting. Friday, while Jack has Jacob at his CECO therapy Jack was rolling him and he decided to bark all over Jack. Jacob woke up extremely congested that morning. So, I guess with all the vomiting and congestion...Jacob decided to develop a little respiratory problem. By the time Jack got home with him that afternoon. He was breathing really really fast, retracting, nasal flaring, wheezing,and had a low grade fever. Doctor Mom is pretty used to this from the last episode. So a very long respiratory treatment of Albuterol, Atrovent, and Pulmacort made things a little better. I also had some left over steroids from his last fiasco..so he got a dose of that too and we topped it all off with some decongestant nose drops. Ta-da Jacob was "fixed" without an ER visit.

Jack took Jacob to the pediatrician on Saturday morning...he was just not fixed good enough to make Doctor Mom happy, plus he continued to vomit. His tonsils were huge and red...they checked him for strep...negative. So he left the doctors office with a 5 day course of steroids and antibiotics to treat for aspiration pneumonia.

He stopped vomiting by Sunday, so today makes 7 days vomit free again. YAY! Monday we drove to St. Pete to the pulmonologist. It was me verse 3 kids...I could have used stronger crazy meds that day. Pretty much she did nothing of importance for me. All his meds are the same. She said is left upper lobe seemed diminished...which I found concerning since usually all of his atalextisis and scaring are in the right upper lobe. He was course sounding but no wheezing. She told me to continue everything he was already put on. She recommended he get a gastric emptying study..but apparently the GI doctor has to order it??? She still very concerned about his reflux. She says she can't keep him healthy if the reflux is not controlled. I kinda felt like things were going great until he decided to vomit last Friday....she is also sending us for blood work to test his immune system. She said she does not think that is the problem, but wanted to rule it out.

Tuesday was not such a bad day. He seen his usual speech therapy bright and early in the morning. We did not do any food trials (I forgot it at home) plus he was kinda whiney and congested still. Then he seen his physical therapist. Oh and the CharleyWrap came in the mail on Monday! I know I did a little mini post from my phone about it on Monday. I have not really played with it a lot. I need to cut the hole for the g-tube, but didn't want to do so until his tube was replaced.

Wednesday we seen the neurologist in Brandon. Tuesday night I think I witnessed the 1st "seizure" I have ever noticed him having. He was crying in his bed. It was 9-10pm at night. He had turned himself from his stomach to his back and was on his side in a weird position like he was trying to roll back over. I picked him up and he did not really react. I brought him to the living room for some cuddle time. I noticed his eyes were doing some crazy things. They would shake back and forth and all over then both would point down to the left where you could no longer see his pupils. This went on for several minutes. He had not had his seizure meds fro the night so of course I jumped up and gave them. So, the doctor agrees that she think he may in fact have been having a seizure. She up his Triliptol to 3ml 2X a day. She also gave me a referral to see the physical medicine doctor that deals with the orthopedic side of his condition. I have to make the appointment on Monday. We talked about his hips getting progressively more tight no matter how much we stretch. She thinks that over time and with the 2nd option of the psychical medicine doctor we may take him off Klonipine and switch him to baclaphin. She also made a referral for him to see another ENT doctor for a 2nd option of his tonsils and adenoids.

Thursday's appointment was all about me :-) Didn't gain any weight for once, I also didn't loose any :-( Blood pressure and labs that were taken all came out normal. Yay! Fat girl has normal labs and BP! We changed some crazy meds around. I am weaning off one and switching out for another. I am also going to try and be better about taking the anxiety medication twice a day like I am suppose to. I also got my very 1st pack of birth control pills EVER! LOL Figure fat crazy girl should not get pregnant while on all her crazy meds. It is weird how just a few short months ago I wanted to have another baby so badly and I hated that the IUD was in so I could not make that choice without going to a doctor, to totally having absolutely no desire to do any baby making anytime soon. :-) We need to get everything else squared away with the kids and ourselves. Trying to live life again.

Friday was the big day. The day I have been waiting for since June 2010 when a big nasty long tube was placed in my baby. I battled the last 10 months or so with a foot long tube hanging from my son's stomach. It was hard to hide and quite annoying. We became very use to it and didn't worry about it falling out after a while. The tube was finally just so worn that it was springing leaks several times a week. The tube which was at least a foot long when it was placed was hardly 5 inches long after many many cuts to bypass holes. Jacob is not the proud new owner of his very own Mickey-button. It is weird and feels less secure than his old tube. I am totally paranoid again that it is going to just fall out and I won't be able to get it back in. It is scary because he can't take food by mouth like he used to. When he 1st got the tube I still worried about it coming out, but I knew he could still ear without it. So, hopefully over the next few weeks the paranoia will ease.

Andrew is a walking champ now. He walks more than he crawls. He is pulling up to stand on is own without the use of walls, furniture, or people. He is loving the whole walking thing. Now apparently since he has a new view on the world he has also decided to leave his wrath of destruction in a greater abundance.

Ava is now singing her own version of her ABC's That goes something like this...and you can't tell her otherwise "a b c d e f g h i (mumble mumble) r t (mumble mumble) w x y z now i know my ABC's next time won't you sing with me sexy" BTW everything is "sexy" lately silly child.

My kids are with my sister for Easter. It will be my 1st Easter without me being home with the boys. I really enjoyed having Easter off last year. Oh well I will end my long post now since I have to be up bright and early this Easter Sunday at 6:10am and not a moment sooner LOL Happy Easter!

I am so very tired I am not proof reading this so I hope it at least makes some kinda sense...even though most of my posts are full of poor grammer and spelling LOL

Monday, April 18, 2011

Charleywrap

Jacob testing out his new Charleywrap....I'll tell you if it was worth it in a few days.
Published with Blogger-droid v1.6.8

Wednesday, April 13, 2011

I HAVE A HUGE ANNOUNCEMENT

No I am not prengant...whew! Thank God!

Watch the video!




My big boy took his 1st independent steps today when the physical therapist was here around 11am :-) This moment was almost 21 months in the making!

Tuesday, April 12, 2011

SSI

So, today was the big day.....we had THE SSI MEETING! For those who have my husband on their facebook, you already know the outcome LOL

Just as I suspected. We had to have a "meeting" with SSI because the income reports show we make to much money. I had to go today with paycheck stubs for Jack and me since October 2009. 2 years of income tax returns, the title to my van that is paid off, and the statement for the car we still pay on. So of course we no long qualify for SSI at this time. I don't quite understand the whole SSI thing, but apparently they count the income from 2 months ago for the current month. For example this month they look at February's income. We have been mailed a check ($54) every month for the last 18-19 months except for 2 or 3 months. Occasionally we would get a letter saying we did not qualify for the next month, but then it would start back up the month after. We did not qualify in December or January (but still got checks for some reason) We did qualify in February I guess because their were only 28 days, their were no holidays, and I took off a lot so my paychecks were much smaller. The months that their are 3 pay checks we are screwed and would not qualify no matter what. Most of the time we are $100-300 over the limit apparently.I don't understand what is different..our income has not changed AT ALL!  She would not give me any strait answers when I asked how much we could make and still get at least a $1 check so Jacob could still get his Medicaid. She finally told me I made "X" amount of dollars in February before taxes and I qualified that month, so she said we should make no more than that.

I don't care about SSI money. Sure it would be great to have a few extra dollars...and if I happen to get fired from my job ;-) I know I could collect SSI for the boys and unemployment LOL...but seriously I am very worried about the monthly cost of his medical supplies after his medicaid is gone. It is going to be hard and I am going to have to budget better to pay for all his co-pays (right now medicaid picks up what the private insurance does not cover). I am hoping his medicaid will last until the end of the month at least :-( I will have to pay $35 co-pays for all specialist including his speech therapy..though I think I remember reading that the co-pay for that changed to $15 (must investigate this more)...but it used to be $35 so assuming it is still $35....that is $70 a week plus Ava's school is $65 a week. I will have to find away to budget $270 a pay check.....this not really being possible on our budget especially with gas going over $4 a gallon....not to mention I already pay $25 an hour for the CECO therapy every other Friday. Making just the cost of Ava's school and Jacob's therapy $590. Then after the co-pays for Jacob's prescriptions which average over $300 a month...one costing $165 alone. I am looking at a cost of nearly $900 a month.

I was worried about the cost of his tube feeding supplies....I called the company that does his supplies today and I was relieved to hear that his health insurance has been covering 100% THANK GOD! I got a bill a few months ago for over $100 for his formula...I think it was billed because he was changed in the middle of the month from pediasure to Vital Jr.  She also told me that she would send me a form for me to fill out...she said I could possibly qualify for a program that covers any co-pays I may have for supplies from them.

How am I going to work $900 into my budget??? I do not know....(BTW I am including Ava's school because I just had to start paying for it. Jack's parents paid the 1st part) Hoping the speech therapy is only $15 co-pays...if not we will switch to once a week...and I will work with Early Steps to maybe find a speech therapist ..just realized something...if Early Steps can not find a speech therapist for him in 30 days they WILL PAY for whom ever I find..YAY!  Maybe I will have that covered! Heck Yeah! If not he will be moved to once a week if it is $35. If gas prices get worse and we are really hurting then I will have to cut out CECO. The $165 Rx may be going too.....

Ugh...trying not to worry. God always provides for us. The lady told me to work less hours...which is not possible at my job...so I realized instead of trying to find ways to work less hours to get government assistance...maybe I should just work more and pay for it myself. LOL The only part that will bother me then is when he is hopitalized...they can send those bills to the pile of other medical bills I already have in collections that I can't pay.

Trusting in God that my son and the rest of my family will be provided for. I considered quiting my job, but I don't want to rely on the government for my bills to get paid. I was told even if I quit I would not get the full benefit amount (which is close to what my after tax paycheck is) so we would still be having less income every month and we would loose private health insurance. With all the benefit cuts going on around here these days..I am just not prepared to leave my family at the mercy of the government...so I guess I will carry on and keep working. Trusting in God for the next step...maybe there is something I don't know about he will qualify for. I guess time will tell.

Oh, the lady suggested that I "give him to someone else to take care of"! Seriously! She said well if you can't provide for his medical expenses...you can let a grandparent or another family care for him that makes less money. She said then they won't count our income because he won't be living with us.Then he would get medicaid and who ever had him would get his SSI benifits...so I am confused if she was suggesting I lie and defraud SSI or is she was serious....I wonder if she would just "give" her child away!

I think Andrew took steps tonight...but my back was turned. LOL He was by the coffee table and I was getting his high chair ready for his dinner. I turned around and he was standing independent in the middle of the room..so he either walked from the table to the middle of the room (2 or 3 steps away maybe) or he learned how to stand up without pulling up on furniture. YAY! Either way he still has never stood alone in the center of a room before. Andrew has a mysterious fever. No cough, no runny nose..just lots or drooling...they say it is a myth that they get a fever when cutting new teeth, but who knows...I hope Jacob does not start spiking a fever!

Jacob had a sleep study last night. I don't know when we will get the results. Poor little guy looked horrible with all that stuff on him. He is STILL VOMIT FREE! He continues to take tiny amount of food by mouth. I have upped him to 2 jars of baby food during his 3rd feed instead of 1...so now I am going to have to up his volume a little to give him extra water. I am so excited that he is doing so well. He is holding things in his hands a little now. Jack says he held beads in his hands for a while today while the EI was here. He says he brought them to his mouth too.

I don't remember if I blog about it before, but I bought Ava the dvd "The Letter Factory" she can say "A-E" now she can also say 2/3 of the sounds of the letters, but just not the letters themselves...nor will she say any of them in order Ugh!

Jacob all hooked up for the sleep study...HOW THE HECK DO YOU SLEEP WITH ALL THAT ON!


Andrew giving Ava some love


Triplet Butterfly Wings: Logan Christopher

Triplet Butterfly Wings: Logan Christopher: "Logan Christopher Gunter7/18/09-01/30/10'Born together, Triplets forever'We love and miss you everyday. You were a precious gift to us while..."

Friday, April 8, 2011

A New G-Tube for Jacob...coming soon!

The last week as been quite the eventful one for Jacob. Physical therapy on Monday, Early Interventionist on Tuesday, Wednesday (all Jacob appts) Dentist 8am, physical therapy, 930, Vision therapy 1030, Speech therapy 1pm, GI doctor 3pm., Thursday Early Interventionist, Friday speech therapy 830am, ENT 930 am.

Seeing this past weeks schedule there is a few things to update on Jacob....

Food Trials at Speech Therapy!!! He ate baby food twice this week! Not much. just a few spoons full, but he did not gag, he kept most of it in his mouth, and HE SWALLOWED IT! He is swallowing about 8 out of every 10 attempts at getting him to swallow with stimulation on his tongue. So I guess the ESTEM is working :-) Hopefully over the next few months he will become more coordinated and we will be able to feed him baby food daily.

On Tuesday night we had a G-tube "accident". He has had the same tube since last June..so as you can imagine after daily use for months now there is a little wear and tear with this tube. It is not the 1st time it has sprung a leak, I have probably cut 3-4 inches off the tube since he has had it. Over time the tube would stretch where the adapter connects and over time it would get little holes at the end of the adapter. I put him to bed Tuesday night and started his 4th feed. Feeds go in over about 1 1/2 hrs. He was asleep and so of course when the pump beeped that it was done, I went to disconnect it and flush the tube. His bed is soaked and his face is down in it...so I am thinking just freaking great he must have puked. So, upon further examination, I go to disconnect the tube connected to the pump from the adapter...and the actually g-tube tube is blown to pieces! What the Heck! So I guess what happened is either from him being on his stomach and pinching the tube off or the clamp getting clamped from him moving it stopped the flow of the food. Well, the pump (which was new and I just got it that day) is suppose to stop pumping and alarm if their is a clog in the line. I assume it did not do this. The tube had busted open in a "T" shape for almost 1 1/2 down the tube. Usually I have only found pin size holes in the tube. So, I cut the tube and put a new adapter on. The tube is so short now their is hardly room for me to move it to the side while he is asleep. The tube felt as if it was out in the sun for months. It felt brittle and weak. This concerned me, It is not suppose to be changed until June, but what if this thing rips in half while he is asleep, at my sister etc. So I called GI and we had a last minute appointment on Wednesday. She measured him for a Mickey button and gave me the Rx to have them delivered to me. I am currently waiting on them to call back to schedule the endoscopy to have his old tube removed. His current tube does not have the water bubble on the inside like other tubes do. His has a hard disk that is attached to the tube so it can't be pulled out from the outside. They have to go down in his stomach and remove it the same way it was put in. I am so glad this tube will be gone. With the Mickey Button I can replace them at home when they are worn out. I will have to worry about it getting pulled out and leaking, which I have not had to worry about with the tube he has now. To put regular cloths on him without having to try and hide his tube all the time will be great! The GI nurse told me some of the meds he is on can make the tubes wear out faster.


Jacob's current G-Tube

Similar to what Jacob's next tube will look like


Dentist: I was worried about Jacob's yellow teeth and the way his molars are coming in. I know seizure meds and prematurity in general can make their teeth come in yellow. The dentist agreed that that is what is wrong with his teeth he has lack of enamel on is teeth so they are not pretty and white...I have the same problem...looks like I drink tea and coffee all day and never brush Grrr.... His bottom right molar has only what  I can describe as a gum blister. The tooth is trying to come in and thee gum will not let it go through. It is swollen and the gum is stretched and almost appears fluid filled over the top of the tooth. It looks like a blister you would get from a new pair of shoes. Ewww The dentist told me it is normal and that once again seizure meds can make their gums do this.

We seen the ENT doctor this morning. He seems happy with Jacob's health at the moment and thinks we should hold off on Tonsil and Adenoid surgery. Jacob goes for a sleep study on Monday night. I have to call the ENT office back if their is something abnormal. We have a follow up in 3 months. If Jacob is still stable and has no respiratory issues we will have the skin tag removed from his ear. His ENT doctor is also a facial plastic surgeon.

Jacob over all is doing very well. He is still congested. His tonsils are still enlarged, but there is no coughing. This Saturday will be 14 days with vomiting!!! Praise God! I still don't know which one is working rather it be the Zyrtec or the Erythromycin. I am just grateful that God gave me the insight to research myself and ask the doctor to try something new and different. If I would not have insisted on him trying medication for gastropheresis we would still be vomiting every day! Thank You Lord for a long awaited answered prayer!

Nothing new going on with his developmentally he still goes from being very spastic to being very limp. He has been very tired lately, but he is a busy little boy. I like his new EI she has come with new ideas of ways to stimulate him. They play with play dough and she gets him to smell things. I have never thought to make him smell things that he is touching...kinda interesting. I hope with new found wellness, good things will start happening with him.

I just made the last payment on his CharleyWrap today...hopefully we will see it in the mail soon. Having anxiety that it won't fit right and that we wasted $500 on something that won't work, but hoping if that is the case it can be remade :-/ I hope. Having high hopes that this will help him!!!

Andrew is standing more. I think it scares him to stand alone without the security of holding on to furniture or people. His knee walking is funny. He will walk on his knees and then when he decides he is not moving fast enough he will put his hands down and take off like a bullet. He is listening more and says more words. He is learning the difference between up and down, in and out. He is understanding the word bite. Hoping  for a walking, talking TODDLER by his 1st birthday!

Nothing new with Ava. She loves playing her video game, but still won't count or say her alphabet with me :-(

I went to the beach yesterday with my friend Melissa for a "girl day" Oh my I new I was going to regret my decision not to put on sun screen, but I also did not realize we would be at the beach for almost 5 hours! My back mainly and legs are so burned...I might just be bra less at work this weekend LOL It was fun though and I enjoyed my day out.
 
The Gulf!
 
Andrew decided to drag Ava's bike in from the garage and try to go for a ride LOL Little boy I don't think your feet can reach the petals yet.

 ***UPDATE*** 4/10/11
Jacob goes on 4/22/11 to get his g-tube replaced.


Monday, April 4, 2011

A 9 DAY RECORD and new Toys

Knock on WOOD! I hate to brag...well I love to brag about this!!! Mr. Jacob has not only NOT been SICK, but we have been vomit free for 9 days. We have been near vomit free for nearly 2 weeks. I am floating on cloud 9 right now. I feel like we can almost move on to the next step...eating by mouth again! When we go to speech therapy this Wednesday we are suppose to start some by mouth baby food feeds. I'm excited to see if he will swallow any of it.



I don't know what is working, but the medication concoction is doing something wonderful for him. He has been less spastic, calm, not crying, heck outside of him laughing and having to feed him etc..you would not even know he was here. He has been so quite and relaxed.

The boys have a new early interventionist. Tomorrow will be her official 1st appointment with the boys. I think it will be a good thing to have a fresh set of eyes to work with them and for someone to have new expectations of them. Hoping she will be able to unlock something with Jacob. It really hurts to see him do nothing but lay around. I am grateful he does respond to noise, voices, and music.

His Charley Wrap is still in the process of being made. It is suppose to be mailed out this Thursday...fingers crossed it will come quickly and FIT PERFECT! Really praying hard this will be a good thing for him.

Picture from Charleywrap.com

 I took the kids to the park today. Our city park in down town has a fantastic kids area for little ones 2-5 and they also have a small water park area with a bunch of fountains that shoot from the ground for the kids to run and play though. Today was Andrew's 1st time in the water there. He absolutely LOVED it. I think he is getting closer and closer to walking. He "walks" on his knees nearly all the time now. I know he is tired of his knees hurting and he wants to stand and walk, but I think his body is just not ready for it. He was crawling on his feet today and he insisted for a while I hold his hand so he could walk. We went with a few friends today. Ava got to see her friend "Banna", and Samuel. I enjoyed getting chance to sit down and talk. Thanks for coming today Kristina.


Ava has really been struggling with things I feel like she should know by now. She can not say any of the alphabet, and she can not even count to 5. At her school they are learning the sounds of the letters. Now this, she is picking up some what. Per a fellow triplet mom's suggestion I bought a DVD LeapFrog's Letter Factory. This is a cute DVD. It focuses on the sounds each letter says which is great because when played the little game on the DVD it would ask  for example, "What letter goes Lllll" and she would go the Purple one with the lollipop..which was technically correct (each letter had a theme for the sound it made like the "S" looked like a snake, the L held a lollipop etc...so she is kinda recognizing the letters visual, she just won't learn the name of the purple on with the lollipop. We watched that dang video at least 7 times today..I wish it focused on memorizing the alphabet too :-/ So, because I am very worried about her not leaning these basic things in a timely manor and she can't seem to work with me with flash cards I bought her this.....


Meet Ava's new Vtech Mobigo (video game)

We came home around 7pm from Target with the things and she has been playing it none stop ever since (3 1/2 hours) I have had to yell at her a few times for already loosing her temper beating it into the couch. LOL Though I do think she is actually learning anything on it, just mearly touching things until it does something...in due time I hope.
I think I have created a monster!
Andrew decided this was his alligator.

A leaf for you....

Ava trying to help Andrew walk

Yeah, and this is the shirt that Ava is suppose to wear on her BIRTHDAY in June! She decided she would wear it today. At Target people were wishing her a Happy Birthday...Ava was quite enjoying it. She would say Thank You and confirm that it was her Birthday..because she thinks her Birthday is everyday LOL



video