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Saturday, November 30, 2013

IT TAKES AWAY

I was reading another parents blog about SMA. So many things he said hold true, things I don't even think about often anymore but still hold true and are part of our daily lives. IT TAKES AWAY!

Over the years we have watched VRK1 TAKE AWAY from Ian, even before we knew what IT was...we have watched IT TAKE AWAY. I have watched IT TAKE AWAY from Becca, Brian and I as well as family members and those close to us. You try not to let it take, you put your foot down, yell at it, put up your best effort. Sometimes you realize it is happening other times you don't. When you have a baby you know, you will bathe it, change it, feed it, get up with it in the middle of the night...as the child grows they will do all of that for themselves. We watched Ian start to do all of that and then...IT TAKES AWAY. The trust that he has to put back in you as you begin to do it all for him again and will continue to do as IT TAKES AWAY.

It is isolating for all of us, regardless of how hard you try for it not to be. Out and about,  you are still on, that trust is even more evident when we are not in his usual environment. As parents, Brian and I can't "hang" out with others the way others do. We can't leave our children with the other children to play, to do what it is they do. We do what we do...taking care of Ian as IT TAKES AWAY.

Treasure yesterday, dream of tomorrow but live for today.

Monday, November 25, 2013

As Thanksgiving and Hanukkah Approach

Thanksful for so many things it is hard to know where to start. While we have good and bad days, some really good and some really bad, we could not get through them without everyone in our village. Regardless of what role you play in our village,  we are thankful for you.
I am thankful for every day we get to have as a family of 4, for all the laughs,  all the memories,  all the fights,  for all the frustrated moments; because we have them together. I may not be so grateful for some of those times while we are in the moment but I have learned to look back on them and be grateful for them.
Part of Hanukkah, deals with the miracle of the oil lasting 8 days when it shouldn't have...our miracles are Becca and Ian and everyday we get with them.
Our forever hands, Becca and Ian holding hands.

TREASURE DREAM LIVE

Friday, November 22, 2013

All Is Going Well

We have been home since Wednesday late morning and all is going well. We are adjusting to all 4 of us sleeping under the same roof and getting to spend time together, it is great.
We are looking to start Ian on home and hospital, the paperwork has been filled out, now we wait for an IEP meeting and then go from there. As usual, the school system does not make it easy...
Have a great weekend from our tinysuperheroes. 

Tuesday, November 19, 2013

How many times do you get to bring your baby home from the hospital?

When you bring your baby home from the hospital, you think it will be the only time... then things happen and you are on your 7th time bringing your baby home from the hospital... today is the 7th time in 10 years we get to bring Ian home. It special each time. Today as we were loading every thing into the van,  I looked over and Ian was kissing the air, taking it all in. Welcome home again baby boy,  we love you.

Hopkins - Day 9

Rounds this morning were good. It was decided Ian would be discharge in the morning. So all good things must come to an end... the IV blew this evening... I guess it agreed that it was time for him to come home. The treatment plan is still up in the air as the on call pulmonary M.D. was waiting to talk to Ian's main pulmonary doctor. So tomorrow morning after taking Becca to school, it is to Hopkins I go to bring the boys home. Tomorrow night we all get to sleep under the same roof. 

Monday, November 18, 2013

Hopkins - Day 8

Pretty much the same stuff is going on here. The doctors want to push it and try to get 10 days of antibiotics into Ian, this is really not a surprise to us and we are actually happy that they are doing that instead of just saying we got in 7 so let's be done. His IV is still doing well, if it goes before day 10 then we will be discharged, if not then we are here until day 10...that would be Wednesday. So we will just continue on.

Many have asked about visiting us in the hospital as well as home. We love to have visitors as well as helpers around the house, however, we do have one request in order to keep Ian as healthy as possible. FLU SHOT, we know we can't make you get one, but we can politely refuse your visit or help. Please understand when asked "Have you gotten your flu shot?" and your answer is no, when we say no thank you.

Sunday, November 17, 2013

Hopkins - Day 7

Well today was pretty much the same as the past few days. Hanging getting iv antibiotics. The M.D.'s said that today was actually day 6 of therapy since he started so late on Monday. They want to get at least 7 days into him, so tomorrow we see if they are going to continue into day 8. Sleep well boys. The girls love you.

Made Him Mad

As any good mother should do from time to time. Ian couldn't decide what he wanted to eat for lunch after going thru all the choices on the menu and his answer was no to everything, I told him to starve. 

Saturday, November 16, 2013

Hopkins - Day 6

Today is another good day, really just hanging out getting IV antibiotics. After Becca and I worked at the Girl Scout cookie booth sale this morning we came down to visit Ian. The four of us had some time together before other visitors came. Nana and Pop gave to hang out as well as Aunt Dana and Noah. It was great to see everyone and play games. Hoping for a good night. Remember treasure yesterday, dream of tomorrow but live for today.

Friday, November 15, 2013

Hopkins - Day 5

Last night and today were good.  Tonight I was able to take Becca down to the hospital. It was great to see the kids together and have dinner as a family. Tonight when Becca was getting into bed,  she said it was great to see Ian again,  felt like it has been years... love her.

Thursday, November 14, 2013

Hopkins - Day 4

All is good. Last night was a good night,  we all slept and slept thru the night. We spoke with the pulmonary doctors last night and they are hoping to get at least 7 days of antibiotics out of him. Right now the iv line which was placed while in the ER is still good. If it does not hold up we will take it from there, one step at a time.
Ian had a special visitors today...Olive. I think Yuba could have a competitor... the smiles on his face was wonderful. Olive came to visit right before we headed to the 10th floor. And yes the sign in his room said "welcome back Ian". We were very happy to see some of our favorites again.
Looking forward to seeing good night again... boys sleep tight at the hospital while the girls sleep well home.

Gilchrist Blog

A few weeks ago I was asked to write a blog piece for Gilchrist regarding our experience, enjoy:

Wednesday, November 13, 2013

Finally....

Sleeping at a reasonable hour....not at 2am. Now time for mommy to get to sleep.

Hopkins - Day 3

Rough night. Ian could not get comfortable, needed a few doses of benadryl to help him sleep. His oxygen levels were good, did not need any. This morning they tried to place a Picc line but were not successful. His veins are crap. So the new plan, to stay in the hospital and get as much iv antibiotics as possible with whatever peripheral iv sites they can find. So we are here until... who knows when...

Tuesday, November 12, 2013

Hopkins - Day 2

Once we were finally settled we went to sleep around 2am. It was a good night,  Ian did not need any oxygen and slept well. I did not sleep as well. We are still waiting on cultures to come back, the plan is to have a PICC line placed, most likely tomorrow. And to go home on IV antibiotics, perhaps tomorrow or Thursday. Ian's spirits are good. I spoke with Becca this morning and she was good, said she was going to do her best to concentrate and not worry about Ian...XO my beautiful. Brian and I are hanging in there, just taking it one day at a time and working on getting what we need while in Hopkins to care for Ian as well as for when we get home. 

Thank you to all for the wonderful messages, whether text, email or Facebook checking in and seeing what we need. We love our support system. 

Monday, November 11, 2013

Hopkins... Day 1

Well we spent the weekend doing everything to not end up back in the hospital but it did not matter. We are back in Hopkins... this infection is doing a number on Ian. Every time he finishes the antibiotic, 2-3 days later he starts showing signs of infection again. He is currently on his 5th round of antibiotics since October. This time we also increased his pulmonary treatments to every 4 hours.  Starting Friday night, he has been needing oxygen every night as well as for a few hours in the morning.  We have needed to suction more often as well as there has been blood in his secretions. So after spending the weekend working with his Gilchrist team and speaking with his pulmonary team today it was decided we were out of options for keeping him home. We got down to the ER around 5:30 and finally got to a room around 11:00.

So far the chest xray looks good.  The initial virus cultures are negative. They did another trach culture, drew blood and did a urine culture. An iv has been placed and iv antibiotics will be started shortly. The goal to figure out what is going on,  the best way to treat it and get him home.

Once we were in a room,  Ian have Brian permission to go home and take care of Becca...the real reason he would not let him leave until we were in a room, I can not drive his wheelchair as well as Brian and he did not want me to have to drive it.  I love my son... Good night all.

Saturday, November 2, 2013

Look How Mad

And all because I was out of mashed potatoes that he wanted for breakfast. I am the worst mother ever...I even asked him and he shook his head yes...its a good thing he is cute.