Oh MY!!!

Okay so the phrase of the day is “Oh My!!”
I got the packet to fill out for the MITO testing that Zach is going to have to go through. I have always known that it is detailed and that I would have lots and lots to fill out but Oh My!!!!

I wanted to post on here some of the questions and maybe some of yall can say “Oh My” with me!!!! How many of yall can answer them? Now it doesn't count if you have already had to fill out the MITO paperwork!!!!

· How old was patient’s mother when she became pregnant?
· What number pregnancy was this for the patient’s mother?
· Was prenatal care provided? If so at what point in pregnancy did the prenatal care begin?
· Was an ultrasound done as a part of the prenatal care
· How many ultrasounds were done?
· When during pregnancy where the ultrasounds completed?
· Where was the ultrasounds completed? Ob/gyn, hospital, etc
· Were any of the ultrasounds abnormal?
· Were other studies done during this pregnancy?
· List all the OTC and prescription medications, vitamins, health preparations, cigarettes used during this pregnancy.( Include name, brand, amount, and when during the pregnancy it was taken)
· Did you have any of the following during pregnancy, and if so what time during pregnancy… bleeding/spotting, cold, flu, bladder infection, fever, yeast infection, other vaginal infections, skin rash, dehydration from vomiting, abnormal growth of baby, premature labor, high blood pressure, blood sugar problems, exposure to x-rays or chemicals, others?
· What was the baby’s activity like in the womb?
· How much weight did the mom gain during pregnancy?
· Due Date
· Actual Birth date
· Birth hospital
· Born at full term?
· How long was labor
· What type of delivery
· Weight of baby?
· Length of baby?
· Chest size?
· Head size?
· Do you know of any problems at birth?
· Apgar scores at 1 min and 5 mins
· At birth, how did baby feed?
· Baby was discharged from hospital at how old?
· Did patient have complications during the 1st month of life?
· Were there complications in the first year of life?
· When did the patient do the following: Rolled over, Sat alone, crawled, walked holding onto furniture, first word, walked alone
· Does the child receive any special services? (ot, pt, st, etc)
· Is the child enrolled in special education program?
· Has the child lost ability to perform skills or life activities that were previously developmed
· Does the child have vision problems?
· Does the child have hearing problems?
· What medications is the patient on? Name, doses, and times taken
· Does child have any allergies to medication?
· Other allergies?
· List all hospitalizations
· List all surgeries
· List all procedures
· List all symptoms: appetite changes/problems, growth difficulties, visual problems, hearing problems, vomiting, diarrhea, constipation, cardiac problems, respiratory issues, seizure and staring spells, sleep disturbances, behavior/learning problems, skin changes/lesions, bladder/urinary tract problems, headaches, menstrual difficulties, sexual dysfunctions, substance abuse, depressions, other psychiatric history.
· Patients Sibling (S) name, DOB, living or decease, and medical problems
· Child’s father information and Mothers information; Name, DOB, Medical problems, age or age of death, number of children.
· Father and mothers brothers and sisters: name, DOB, medical problems, age or age of death and number of children.
· Ethnicity of both of your parents
· As far as you can trace back in your ancestors do you or your parents’ parents have common relatives?
· All docs that care for patient
· Medical records for the last 6 months to 1 year
Okay I give up, I can’t type anymore!!!!
OH MY!!!!!
I have no idea!!!
OH MY!

Enjoying ourselves

With all the hard posts and all the hard things going on I had to take a minute and tell all of yall that I am extremely blessed. I have an AWESOME husband who is able to provide for all of my needs and wants, 2 AWESOME boys who provide me with lots and lots of entertainment and cuddles, and I am blessed with AWESOME friends as well.




Sunday we went to listen to Uncle Al (Adam’s brother) speak at a church…. We knew that the day was going to be hectic but we were excited to go, after church we went to an Aunt’s house and had lunch. It was great.

The boys enjoyed being outside they played baseball, Aden got to be barefoot and Zach enjoyed being in the shade but being outside. It was a load of fun and it was wonderful. Both of the boys loved going up and down the steps and playing on the porch. They had a huge birdhouse and they loved looking at that. There was a bell that Aden was able to ring with help from someone. Aden had a blast!

I hear so many negative stories about families not accepting the g-tube and feedings and all that that when I heard that we were going I was nervous, this side of the family is AWESOME and has always been supportive but Zach is now on cont feeds and they haven’t seen him in a while so I was nervous. They had a great time but Zach got really hot and we had to strip him, he got rinsed off with cold water and we decided to leave him naked for a while.

Well, the family was so loving and accepting of it, it didn’t bother them AT ALL. It was wonderful… at one point we were talking about Zach’s button and Zach decided that he had to show them the button it was so cute, Zach pointed to it and then spoke something in Zach mumble. It was so cute.

So What have we been doing lately????

So it has been a while so please forgive all the pics and all the stories. We have several things that have been going on so I thought that I would start with one and just keep going.

Aden loves his brother and here are a few of the pics that we have taken of them together lately!

Zach LOVES LOVES LOVES sunglasses!!! I had to post this pic, the sunglasses are too big but he cried when we took them off. He is also growing into some clothes, this outfit is 3-6 months and it is so cute, it by far is the cutest outfit that I have put him in!!!

So I have learned that Aden is a ROCKSTAR!!! He was trying to show me how he could play the guitar and what all it entails. However, Me a ROCKSTAR, Yeah Right!!! Aden however is a ROCKSTAR!!!!!!

Recently Zach has been flipped to continuous feeds 24 hours a day….. One of the questions that I have been asked is how do you put him in the car seat if he has the backpack on? This is something that we have had to figure out. Adam figured out the best way and it is something that we have carried on doing in every vehicle that we have had to put him in.
Adam took his backpack and hung in on the little clip made for hangers and clothes. So this is what it looks like and it works AWESOME. I wanted to brag on Adam a little and show all a way that we cope with things

Zach had a Lekotek play therapy appointment so he was totally exhausted when we got done with the hour, Aden was pretty tired to but after about an hour of resting he decided that he was energized enough to play. I asked Aden what he would like to do and got an odd response “Bake a Cake for Daddy!” okay so what did we do, we baked a cake for Daddy. It was a lot of fun.

There are some things to know about this cake though:
1. Aden is scared of noises, I mean they hurt his ears and whenever I use the mixer he runs and hides, so I tried to have all the things ready for him today.
2. This is Yellow cake mix, it is the only kind that is premade that Zach can have.
3. We are out of sprinkles (why does this matter I will tell you at 4)
4. Aden asks if we can “color the cake like we did eggs?” I mean that was several weeks ago and he still remembers the food coloring, I guess he liked doing that. So He picked purple before I could even rattle off some colors to him. Why purple I have no clue but purple it was. Now this is significant though because he knew that since we didn’t have sprinkles it would be a plain yellow cake. I make the yellow cakes like a confetti cake since Zach can’t have the confetti cake mix. It is amazing what he remembers. Did you know that a Yellow cake with purple food coloring looks like chocolate cake when it comes out of the oven.

5. I forgot to dump some of the spray since I allowed Aden to spray and man did he use a lot of spray so it has a yellow looking ring on it. However, it came off when I transferred to the cake plate. It stuck to the pan.
6. I asked Aden what color icing he wanted and any guesses on what color…. PINK? He wanted Daddy to have pink icing, well okay, pink icing I mixed up.

7. He loves icing and after icing the cake for a few he decided to Hoard the icing bowl and eat the remaining icing, which I had put most if not all the icing on the top of the cake for him to spread down and all that, but still I didn’t get a lick (although that is good)

8. He also asked that since we didn’t have sprinkles if we could cut strawberries to put on top, so they are in the fridge waiting for daddy to get home.
Aden Made Daddy a CAKE!!!

Sometimes it is just hard

They don’t always tell you how hard being a mom is… they don’t tell you about having to get up when they are sick, breaking their hearts by saying no, and they don’t tell you how sometimes friends will change because you have little ones or how if you don’t do something like they think that you should that they will drop you.

I don’t have pictures of the recent days (the two above are from Easter); this week has been one full of testing and of waiting. So I thought that I would just vent. I just am going to list my thoughts. I am so sorry that this is so jumbled.

• I have a stupid fever blister, but it isn’t on my lips where I could handle it, the stupid thing is at the base of my nose, it hurts and it is irritating and since it just popped up I have several days with the thing.
• Aden has decided that he no longer want to potty train or go potty in the potty. He will still pee there but he doesn’t want to poop in there. I have decided that I am not going to worry about it but you know what that is really hard to do, so I go back and forth about getting mad and upset and know that it will happen to hang in there.
• I really wish that I could find an OT and ST that would come to the house; it is so hard to coordinate all of the appointments and to find childcare for Aden. I have made a request to find one that would come here.
• I wish that some of my friends would still be here; it is hard that they don’t want to chat or talk or when we do it is like pulling teeth. It is hard when you call and everything is “yes or no” and there isn’t any real conversation.
• It is hard to have everyone judge how you take care of your children, they always have an opinion, I mean I know that and I am glad that people express them but still… potty training, sleeping, eating, discipline, doctors, pacis, testing, babysitting. Goodness, no topic is off limits.
• It is so hard when you feel like you never get anything done, the clothes always have to be done again and the dishes do too, there is always another appointment. You wait in the doctor’s office just to be told to wait some more. The cycle never ends. Sometimes it is easier than others but sometimes it is harder than others as well.
• It is really really hard to explain Zach to everyone… I mean I don’t know what is wrong, a diagnoses, isn’t going to change treatment. I want a name to it but will it change what we are doing, no, we are doing the best we can. No, I can’t do more…. I mean what else do you want me to do. I don’t care that you think that you will move Heaven and Earth if he your child, I mean do you think that I haven’t been doing that, do you think that I really don’t care about him. Why does it matter if he still has his paci or if his tube isn’t hidden when he goes and plays? I mean yes there are germs and yes there is dirt but come on, Do I need to worry about it all, all the time? Zach needs and Aden needs to be able to go out and be "normal" children. They need to be able to go and play and have interactions with other children. They shouldn't be inside the house all the time and Aden shouldn't be punished for his brother being different and Zach shouldn't be punished because he isn't able to gain weight and because he has special needs. Do you have a child with special needs? Do you know what it entails at all? Do you know what it is like to go to 4 to 9 appointments a week and if you are lucky that you only have 2 that week? Do you know what it is like to be told that Zach is too small for things that could help him? Do you even care?
  

I guess my main thing is… If you are a friend be a friend! You might not understand and you are allow to state your opinion but don’t make you friend feel like she is doing everything wrong. Sometimes just being normal is the thing that we need the most… to talk about work, dating, husbands, and children. To go out for a dessert or run to get a diet coke or to meet you for a few so the children can play but so you realize that you aren’t alone. You know the normal things that are part of life. To be part of your problems cause it gets hard to only talk about my problems. I don’t know if this makes any sense but they never tell you how hard it will be!

GES Testing

Zach has had some medical tests scheduled and one of them we have already done, it is called a Gastric Emptying Scan or GES and it is a test that measures how the stomach is working at the time of the test. I tried to find pictures of this online to show Aden and I couldn’t find anything that a 3 year old would understand.

The GES takes about an hour for the 1st part, if the numbers are at a certain level then they ask you to stay for an hour and then they take another 20 sec picture. Since the 1st part of the test is an hour and he has to stay still the whole time they asked if I wanted him to have a low dose of versed. I said yes and we went off to get it. The nurse asked me if he would take it orally or if they had to put it through the G-Tube, I told them that he would take it orally; he was ready to have something wet in his mouth. She warned me that it tasted horrible and that he would have to take it all… I told her don’t worry about it, just hand him the syringe, so she did and sure enough he took it. She was amazed that he did without making a face and even more amazed that he asked for more. Yes, my son knows how to take medications.





We went back to the room where they were going to do the test and they gave him 6 ozs of formula with a radioactive agent in it. I asked them to get me a small syringe so I could put some in there for him to drink/suck on while they were bolusing him. It went well and they were amazed





Then they went to lay him on the table and to put him under a camera for an hour; yes he had to stay still the whole time. I warned them that he was strong and they didn’t think that he was until they went to put the thing on him to help keep him still. I was able to stay there and sing and talk to him the whole time. It was hard but Zach did well. There was a screen that I was able to see that had a pic of his stomach, it is the white blob looking thing (the black box to the left) and how much time had elapsed and how much time was remaining (the green bar).

After the first hour, they got him up off the table and then we had to wait for an hour and come back to do a 20 sec picture to see how full the stomach was. While we were waiting we went and saw the fish, saw the puppies that were visiting, walked, looked at the TV, and colored. The hour went by pretty quickly.

As a treat we went and had lunch with Daddy, Zach was delighted to see him.

I got a phone call back that told me that it was normal… so that is good. I don’t have any more explanation than it was normal.

Wow Where to start....

Easter Egg Hunts....

WOW, we went to 2 of them and had a blast at both of them.

A couple weekends ago we went to our 1st events as a family that has a child with special needs. We had a blast, the 1st on that we went to was a small Easter Egg hunt (it was a makeup day due to a rainout) and the boys got to hunt eggs and then they played with bubbles. The 2nd Easter egg hunt that we went to was AWESOME, it was huge and had things that we never had thought of. It had an Animal Walk, think Cake walk but you win a stuffed animal instead. Aden got a boy doll and Zach got a monkey. They both still play with them. They had BINGO to play, refreshments, pictures with the Easter bunny, and an Egg hunt.

They Easter Egg Hunt that we did at the 2nd one was way cool, they had hay bales set up with the eggs hidden on, in and around them. It was cool because Zach who by this time was exhausted was able to stay in his wheelchair and still hunt eggs. They enjoyed it. Aden had a blast with it and it was AWESOME to get to be a family and enjoy the hunt together.

The WORLD BEST PLAYGROUND!!!!

We also found this cool new playground it was way cool and the boys enjoyed going to it. It was like a massive castle and it had ton of things that both of the boys could do. We only stayed for a little while but they both enjoyed climbing up into it. One of the biggest things to me is that Daddy enjoyed it as well, we both left saying that it was a super cool playground. It had a maze, a suspension bridge, a tire bridge, a spider net, little rings and little monkey bars, several slides, and swings.

A Busy but AWESOME day!

So for all the bad days that Zach has been having, I think that he is finally starting to rebound and feel better. I am not sure if it is just that he is healing and getting healthier or if the cont. feeds had something to do with it but I think whatever it is needs to stay!

Zach with his bookbag and pump_____ Zach with his splash!

1st, Zach is back on cont. feeds, what this means is that he has to be hooked up to the feeding pump 24 hours a day. I can unhook him to take baths or if there is something that needs to be done but on average he is hooked up all the time. He loves his backpack so I really don’t have an issue with this; one of the hardest things to do is to make sure that there is formula in the bag, although we are coming up with a system. While hooked up he can still eat, drink, play, laugh and sleep… so to him it is no different. Plus the weight of the book bag with the pump and feeds really helps stabilize him and he is able to walk much better. He is not really eating or drinking any more with the feeds but he isn’t eating any less either, he loves his splash so that is a blessing. Splash is a Specialized formula, it is kinda like a juice and has all the nutrients in it just like other formulas; it comes in juice boxes and has 3 flavors. We can’t get it covered by insurance right now so it is a treat that he gets every now and then. We get samples from the GI office and although we might be able to get it covered by insurance we know that they will only cover the Elecare or the Splash and if we try for the splash and don’t get it that we might lose them covering the Elecare as well so for now we aren't trying to get the splash covered.

Peg and "w-sitting"____________Trying to get him not to W-sit

Zach getting his leg "brushed"

2nd, Zach has had a number of therapy changes. We are doing speech therapy twice a month now, this is an increase. He is starting to be able to follow commands and is learning how to communicate with us a little better. He still screams a lot but he has developed the ability to shake his head for “yes” and for “no” so this is helping us out a whole lot. He has a modified sign for “more” and for “all done” which again helps us more than I can ever tell anyone. Occupational therapy seems to be helping a lot we are working on sensory issues, not w-sitting, and building up some strength. Several of the things that we are doing while there is brushing therapy, playing in rice, using a peg board, and coloring while not in the w-position. The hardest thing by far is the w-sitting, or not doing that, it is how Zach feels the most stable and the most in control so he fights us hard when we try to keep him from doing that. The therapist is going to be working on building his trunk muscles which will help his low tone and in return will help him be able to sit more comfortable without being in the w position.

Zach and his new A-AFOs walking outside

Zach's new A-AFOs _______________Zach's old AFOs

3rd, Zach got new braces and they are so neat. Zach got his 1st set of AFOs back in June, he was 11 months old and we were told that they wouldn’t last very long because he would out grow them pretty quickly and that they would have to be replaced. Well, after 9 months we had to get another pair because Zach has gotten taller and the old ones were no longer tall enough for him, he still fit in them fine but they wanted the support to go up higher in the leg. So the neurologist ordered, wrote a prescription, for A-AFOs, which means that they aren’t solid. These new braces will have an ankle built into them. We went and got him casted for them and then we were able to go and pick them up this week. It was so funny they warned us that he wouldn’t be able to walk in them immediately and that we needed to build up to them again. Well, I put Zach on the floor and off he went, he loves them and they are wonderful.