Saturday, March 19, 2011

Slowly Victorious

Nothing surrounding the boys happens fast. Nothing....well....they get really sick really fast...but besides that....everything moves s.l.o.w.l.y. To be honest, I am pretty much okay with this slow pace. (Not that I wouldn't be thrilled if they miraculously learned to walk tomorrow!) The court process has been painfully slow too. Nothing has gone easy. (Rich says it is to build up my long suffering! I physically get sick after every court hearing. Its just very hard.)

This week started out bad. 105.3 fever for Thing One. He was lethargic, swollen, somewhat unresponsive, had a terribly high respiratory rate, and refused liquids. I was able to stabilize him enough at home to avoid the E.R. and take him to Dr. O. He had, merely, an ear infection. After two doses of his ear drops, he was left with just a runny nose and no fever. After about 12 hours, he drank again. It just seemed like until Wednesday night, things just were not going well. Nothing seemed to fall into place. Whiny, sick boys ruled my days. We've been having continual viruses since early February. I was feeling weary. We were out of food. It was raining. I also have had no nursing or daycare this I had to do it - go to the grocery store - with all the rain....and it was lunchtime....and you know went okay. No major meltdowns. The kids were all pretty content to eat the free cookie and slice of cheese from the deli. Morgann helped feed the boys while I shopped. It went just fine despite being soaked with cold rain!

On Thursday, the glorious sun made it's appearance. Warm, sunny day at last. Morgann and I went on a jog - just about a mile. The boys loved it. Morgann and I both got some exercise. Then we went to the park. Last year, the park was not much of a hit for the boys. They tolerated the swings for a little bit and then just wanted to be pushed around in the stroller. But then Morgann wanted my attention. I always felt...torn. Wanting to play with Morgann, but NEEDING to attend to two little boys. But this time, what a difference. They both loved the swings. Thing One loved the slides...Thing Two is still warming up...but he will get there...and then they enjoyed watching Morgann swing. They laughed as she went higher and higher. They are so much more aware of their surroundings now. After the park, we walked about another mile and then went home. The boys went to sleep and Morgann went next door to play. It was such a victory of an afternoon. We now have activities that ALL THREE kids can enjoy and be apart of together.

Yesterday was similar - long walks and playing on our playset in the yard. Everyone content.

Today, we tackled Walmart - on a Saturday - and the kids all had fun. Me, eh, I hate Walmart - but to have happy kids and watching them enjoy the trip - that made it worth it. Both boys have extremely low muscle tone. They are the floppiest two year olds I have ever met. But I realized as we were leaving Walmart, that they are becoming so much sturdier. It wasn't until the very end; Thing One flopped over in the cart. Morgann helped him get back upright, and he did a lot of the work to get upright....a small victory for both kids. Morgann who now can help her brother, and Thing One, who now can help himself get out of a flop:)

I have to admit, one of my biggest fears of raising these boys - who, as much as dislike typing it - are disabled - was doing fun stuff together as a family. This week I received such a great gift - HOPE and a victory. We do have fun things we can do together as a family. Our normal may look different, but its okay. Everything may come slowly, but it is coming. The days are getting better. The boys are getting healthier...and one day....courts will be done. Slow...but that’s okay. It’s teaching us a lot.

Thursday, March 10, 2011

oh Boston

I have a love/hate relationship with Boston. Its an awesome city. But so far away...not really...but that hour and a half seem so long! And I always get lost...somehow. I dont know how I get so turned around so quickly:) But I am thankful we are going just once a month rather than once a week.

Anyway. We had our monthly venture down to beantown today. We picked up some cannolis at Mikes. Got lost. Made it to Children's just in time for K's G/J change....and then headed home again...and missed most of the traffic.

Love Boston cause they saved K. Hate Boston cause I get lost. Love wins for sure:)

Wednesday, March 2, 2011

Swallow Studies

Little Men both had swallow studies today. Our awesome Speech Pathologist, Karen, set up the appointments and helped assist in them. I have to admit, I was SUPER nervous to do the swallow studies. Both guys have trouble swallowing liquids. K has a G/J tube for ALL liquids and he eats food by mouth. K. loves loves loves to eat! Food motivates both boys in their slowly progressing skills and movement.

K. has been getting over a particularly nasty virus - he's been so junky and has been vomiting and needing oxygen so I was even more nervous to do the swallow study today.

Karen met me in radiology and after our typical battles with admissions and consents, we finally were able to move forward with the study. Karen convinced me that even if K. aspirated all foods - it wouldn't mean he would never be able to eat again since he was sick his swallow wouldn't be the best but it would also be beneficial to know how to go forward with his feeding when he is sick.

(Sorry long story) Anyway. K went first and he did SO GOOD! He swallowed all the foods so well. He does have a delayed swallow - meaning he swallows when he moves the food to his esophagus rather than on the back of his tongue....(think I explained that right) Then we moved forward with testing him with Honey Thick liquids - really thick liquids basically! So with the help of Karen, we will move forward with introducing these thickened liquids into his diet. Obviously it won't replace the fluids he needs from his G/J, but its a start. For K. I feel that his chronic congestion is not from foods penetrating his airway. Good if we can find WHY he is always congested/junky besides his laryngomalacia dx.

Mr. I. on the other hand, didnt do as well on his swallow study. He penetrated all liquids - which means all the liquids he drank penetrated his airway. He didn't aspirate them - the went in the airway and then he forced them back out - but its not the best scenario. Basically, he is at a higher risk of aspirating (which he has done in the past) But, we will work with him to drink with a straw which would be safer. While eating all his foods, he leaned forward a little bit before he swallowed, which aided in him safely swallowing all his foods. He did a great job with that and safely eats solids. (great news there!) If we can have him drinking from a straw, we think he will do better at not penetrating his airway and hopefully help with his congestion levels.

So long story....but glad we got the studies done and the boys did pretty well!

Tuesday, March 1, 2011


Took a little drive.
Ended up in Virginia.
Saw my mom and dad.
Took lots of pictures.
Ate outside
It was warm.
No snow.