Home after 3 Weeks.

  
Ronan is home!  He was in for exactly three weeks.  Now the after appointments begin and I have a full day booked tomorrow with back to back appointments.  I have to take Jadzia to her speech therapy then the lady from home health is coming over to access Ronan and make sure I understand all his new equipment then I have to make arrangements for his new formula and after that I have to get things taken care of at the pharmacy and pick up some more supplies for him.  My day will then finish up with Chemistry class.  While that might not sound like much it entails enough to take the entire day.

Dancing!

I also need to set up half a dozen appointments with all his specialists.  Ronan now has a feeding pump due to the fact he has to have a continuous night feed.  We seem to have our own little hospital room set-up at home now.  He has his pulse-ox and oxygen, his nebulizer, IV pole and feeding pump, as well as two forms of rescue steroids and glucagon shot.  I'm starting to feel more like a nurse with each passing day.  

 The good news is though Ronan is home and I'll learn whatever equipment I have to to keep him at home.  He was beaming when he walked in the door and saw his sisters and Xander.   I heard Landon was excited Ronan was coming home and will be glad to see his little brother once he gets back from Grandma's.

Ronan and Grandma.

There were a couple of cute things from the hospital and both of which I did not get pictures of.  The first one involved Isaac, Ronan and the toy car Ronan likes to sit in. I had left the room for a minute to ask the nurses a question.  As I came back into the room I heard Ronan squealing with delight.  Isaac was zooming Ronan around in his plastic car and was even adding race car sounds to the mix.  Ronan was laughing and clapping and he occasionally signed "more".

 The other thing was Ronan made a friend.  He became buddies with another little boy (who also has Down Syndrome and was in the hospital)  the little boy hugged Ronan right away but Ronan wasn't too sure about him at first.  Before too long they were pals and playing together.

I think in a couple of weeks things should settle down and hopefully we can settle into a routine.  Hopefully frequent hospital visits are behind us and the trip to Philadelphia is no longer a possibility.

Home Sooner and New Tents

Ronan is still in the hospital.  Tomorrow marks day 20.  His PICC line went bad and had to be taken out.  This ended the IV weaning and started the forty-eight hours to him going home.  The end of the forty eight hours is tomorrow morning but I am unsure if they are letting him go home then or will send him home on Monday.  I am leaning towards Monday since that will be when his Endocrinologist can come in and talk to me. 

 He did have one low of 51today but they don't seem too concerned unless they fall below 40 which I still think is way too low.  His Endocrinologist has been on vacation so I still haven't been able to talk to her about how the hospital has been handling his lows.  Fortunately they are far and few between now. 

I will be glad when he's finally home and hopefully his new medicine will keep him home.  In the picture below Isaac put his hat on Ronan's head because Ronan kept grabbing for it.  Ronan hates hats.  So when Isaac put it on Ronan's head Ronan showed him his famous Ronan pouty lip.

Get this off of my head!!!!

Landon got his turn to visit Ronan.  Ronan was glad to see his big brother and followed Landon's every move.  I wanted to make sure Landon got to see Ronan because today Landon went up to visit his grandparents for a week. 

It's strange with only Xander, Jadzia and Inara at home. Whenever any of the kids are not home it feels like a piece of our family puzzle is missing.  It just doesn't feel right.  It never feels right when Ronan is in the hospital.

I keep thinking about when the new baby arrives.  After she gets here we won't remember what it was like before her.  That is always the way it goes no matter how many kids we have life before that little person starts to fade and you no longer know what you would do without them. It's like they were always meant to be a part of your family.

In case you haven't guessed Inara's favorite outfit is her lady bug pjs.  Whenever she sees them she starts jumping up and down and yells "Bug jammies!!".  She would wear them all the time if I let her. 

 Also her hair is getting longer.  It has reached her shoulders now.

 

 The kids got tents this week.  This will hopefully prevent the extensive fort making that has taken place all over the living room in the last few weeks.  They arrange chairs various places to hold blankets up and end up covering the entire living room.

And here are extra pictures.

Lost tooth and lego buildings

It has been about a week since I last posted.  Ronan is in the hospital still and tomorrow marks day 17.  This is his longest hospital stay to date minus the NICU.  He is doing better though and they have him on a new medication that seems to be working really well.  He has only had one low of 54 since Friday when they started him on it. I am hopeful that this might be the answer.  

 Xander went up to see Ronan again today.  I plan on taking Landon tomorrow and Jadzia on Friday.  Ronan was very glad to see his brother.  Ronan's Early Access team came by the house this morning to meet with me about goals for Ronan.  His team consists of a Speech therapist, occupational therapist, Hearing teacher, nurse and then the director for Early Access came along too.  He used to have a Physical therapist with their group but once a child starts walking they no longer receive PT through early intervention.  He still has his private PT.

In May Ronan will turn three and will then be transitioned from the program as it is birth to three.  I will miss his team as they have followed him since he was born.  They are setting up a time for Isaac and I to tour the preschool we might send him to in the Fall.  I'm thinking preschool might be good for him to socialize and maybe work on communication skills since he still does not speak.  He only signs.  The classrooms are smaller sized and they are equipped to handle special medical needs and also have therapists work with the children.

Ronan has been spending his days sitting in his tiny toy tote and hanging onto the duck blanket the hospital gave him.  He has also been enjoying the respiratory tube that the childlife specialist found especially for him.  When I told her that Ronan's favorite toy ever was accordion tubes she set out to find something comparable and respiratory tubing was what she came up with.

Landon lost his third tooth.  His bottom right next to the two centers and the one on the left is loose.  I didn't have any change the night his tooth fell out so I had to give him a piece of paper with  how much the tooth fairy direct deposited into our bank account.  He was ok with this idea.

Xander is still my main lego builder.  He can construct just about anything with legos.  I knew he was going to be a good lego engineer when he was two because he built an extremely elaborate helicopter.  It was several feet long and anyone looking at would instantly be able to tell it was a helicopter.  I was astonished how well his two year old mind had envisioned and created a perfect looking lego helicopter especially on such a large scale.  His current project is a dollhouse motor home.  He has been working on this one for a couple of days and he says he still has some work to do on it.  

Jadzia has been continuing with her speech therapy and making a lot of improvement.  She also misses Ronan.  She woke up the other morning and inquired where Ronan was.  When she was told he was still in the hospital she let out a huge sigh and fell to the ground in frustration.  With arms crossed she exclaimed "Still!!!"  Those had been my thoughts exactly.

I'm going to try and potty train Inara once Ronan is out of the hospital.  I started back in December and she was doing really well.  Then Ronan ended up back in the hospital again and I put it on hold. Now she tells me every time she goes in her diaper so I really need to get things going again but I'm going to wait until Ronan is out so I can give her my full attention.

And here are the random pics.