This pasted week has been full of unexpected things.
My friend Karen who has 2 surviving triplets family had a scary situation today. She had a very similar situation to me. TTTS and the death of one of her identical twins 4 days after he was born. Her TTTS survivor Patrick went into respiratory distress and stopped breathing. Praise God that his father Paul knew exactly what to do. He did CPR and called 911. Patrick is stable now and resting comfortably in the PICU. Prayers for a quick recovery!
Saturday the 26th marked the 1 year Angelversery for Summer Mitchell. She was one of my triplets' room mates while at Winnie Palmer. She was 1 of 4. Summer and Hunter are now in Heaven while Skye and Henley stay here with their parents. This is the link to Skye and Henley's blog honoring Summer on her Angelversery. Summer's Angelversery
***I started this blog on Monday morning...it is now Tuesday night***
Our Disney trip last Wednesday did not quite go as planned. Christine and her family came over to spend the night so we could get up early and head to Disney. Well, I forgot to set the alarm, so our wake up call was my friend Jill showing up to watch the boys. I frantically scream down the hall for everyone to get up and get dressed! Well, Christine must have caught a stomach bug...she said she was to sick to go. She said she had been up all night vomiting among other things....so to make a long story short, after much deliberation they decided not to go. Her oldest son was complaining his head and eyes were hurting and he was crying...so he went home with Christine and her husband Alex and her other son Xander went to school. We took her daughter Bree with us and Jack, Bree, Ava, and me went to Disney World. The girls loved it and we had a great day. Maybe Christine will be up to Disney in the future, but not sure when or if it is even possible. :-( She started Chemo on Monday. I have not had a chance to talk to her yet, so I am not sure how she is handling things. She takes 3 pills a day for 5 days then has 23 days (I think) off. So I don't know if she could make a trip out maybe before she starts the next round or not...not sure if it would be to risky with her getting sick around tourists.
Update on my friend Karen's son Patrick. He is stable and doing well. Haven't seen an update, but last post said he might have been discharged to day or tomorrow.
Well, the boys have been sick since about this time last week. Jacob of course more than Andrew. Jacob made it a record week without vomiting a few weeks ago...then he got a slight cough and the nose congestion came back a little....then he threw up about every 3 days...then every other day...then daily...then Monday every feed...ugh! So now we are back on a continuous feed at 30cc an hour. He is congested and coughing. So now I know that if he is truly not congested and coughing at all he CAN tolerate full feeds over an hour. Heck, I fed him over 30 minutes one day and he tolerated it. It was total bliss! The anxiety over when the next "sickness" was totally ruiningthe bliss though. The constant worry about WHEN he would vomit again totally sucked too. So, I will be calling the GI doctor again tomorrow and continuing my quest for the nissen. It was nice while the sickie was gone, but I should not have to worry if my kid is going go puke every time he coughs!
Nothing new going on with him outside of the sickie being back. I feel like he is not EVER going to achieve another goal. He stopped rolling over. I think his total rolls were 15 all together. He stopped pushing himself up. He DOES continue to hold his head up most of the time. I can't even get to take a step at all. I don't think his glasses do shit for him. He kinda just sits in his chair in his own little world. He laughs when the other kids are crying or if their is any loud repetitive noise. He randomly reaches his arms out in front of him and half opens his hands. He still has no hand, trunk, or leg control. We started conductive education with him 2 Fridays ago. She seems to think she is going to get him to do amazing things...we will see. I am going to ask if I can record her so I can follow what she does at home with him every day. What she is doing makes since. It will strengthen his muscles and show him how to move. It was interesting to watch her.
Andrew is getting closer and closer to walking. Since January he is getting more confident. He likes his little gold walker. I took him outside in it last Thursday and he walked all over in it. He even turned it a few times on his own. If he is near something he can hold on to he will walk along it, furniture, toys, or the wall, then he crawls in between. I am waiting for the day he decides to venture that 1st real step. He does not stand alone yet either. He repeats most words you tell him and has master "fetch" He brings you a ball and then says, "ball, throw, ball throw" you throw it he fetches it and brings it back. He LOVES this game.
I have been trying to work with Ava on ABC's and her 123's and NOTHING. This kid absolutely WILL NOT learn for me when it comes to these 2 things. She can tell you names of most colors, shapes, and animals, but can you tell her to count to 5 Noooooooo!!!!! and I KNOW SHE CAN she just WONT!
Well, it is getting late, hopefully my next blog will hold lots of good news :-)