Sunday, November 28, 2010

24 Days

I have been nesting again. Definitely not expecting although I think about it way more often than I should. My clutter is a way of reminding me that I haven't lost my mind because somehow in the deepest darkest trenches of my mind, I can remember where I put almost everything. I found Jacob's baby hair on a knick-knack shelf in the kitchen for example. Gross but I left it there because I know where it is until I have time to scrap book it away. I decided to tackle Matthew's room and closet. We are toy hoarders because you never know... but I finally threw out some toys that were never meant to be loved again. And I threw out the one-armed clothes that Grammy altered for Constraint Therapy. We saved both of the casts of course.

Friday, November 26, 2010

26 Days

This afternoon we decorated our synthetic Christmas tree. Just as we do at Nana's house each year, we tell the story of each ornament, who it belongs to, where it came from. There are some that were hand-made by my mother many moons ago that she laughs about because they were "cost-effective" at the time. But she held onto them and now so do I - a felt Christmas tree and one that looks like I don't know, a spiral broom? There are some that Nana held onto for her son for when he was grown and had children and a tree of his own. "Daddy when he was a little boy". Some are newer ornaments given as gifts to Matt and I or the boys. Some were made by Matthew. We LOVE our Christmas tree.

Monday, November 22, 2010

Oh Hello

Hysterical. Manic. Obsessive. Character traits that would be undesirable if not for Jacob.

With surgery in mind, I scheduled appointments with feeding, pulmonary, and immunology specialists. We made it to two of the three appointments before I realized that I am a specialist. I know Jacob.

I have been concerned about his diet because he refuses to eat fruit and most vegetables. When my mother was sick a few weeks ago, she emailed me about the side effects of some drugs including anti-convulsants that leave a metallic taste in the mouth. Sure enough, food perversion as it is called is a possible side effect of Depakote.

Jacob's lungs sound clear and a follow-up x-ray will be taken when we go for his pre-operative appointment. He has responded well to his treatment and has not needed his rescue inhaler since the week we were discharged from the hospital.

I am often at odds with myself because there are some fears that are real and others that are not. As much as my undesirable character traits create the fears that are unrealistic, they also help me to tease them apart.

Sunday, November 14, 2010


"Puh-poh" he said as he showed Mommy a crayon that was PURPLE! I don't know if it's because I've been home with him all day to notice or if he seemed to plateau because he's been sick for over a month, but Jacob has been making some real gains in the speech department. His ability to articulate sounds is very limited but he is making the most of what he can say and because he uses his words in context, we are able to figure most of them out. In the past I think he scored greater than two standard deviations below the norm for his cognitive abilities, which his EI Team attributed to the fact that he could not verbalize what he was thinking and could not show his intent without the use of both hands together.

I don't know if it's because of the inhaler medication or if he just realized that he's two-years-old, but Jacob is becoming a mischievous little boy - a true sign of intelligence to me.

Friday, November 12, 2010

Random Thoughts

When Jacob was transferred from the ICU to the "floor" at Hasbro Children's Hospital, we were in the room next door to where Jacob was admitted with Infantile Spasms about a year and a half earlier. Freaky.

Jacob labeled the moon in the sky this afternoon! We have a battery-operated "Moon in my Room" that Jacob loves to look at and he was able to transfer the idea of that moon to THE moon. We lost the remote control to the room moon so it is always a full moon. Tonight the moon actually is a crescent moon.

Jacob pushed Elmo in the stroller this morning using TWO hands. He increasingly uses his right hand to assist him while playing.

Jacob pretends that the hippo on the Sodor Zoo (Thomas the Train) Hippo Car bites him. He puts his finger in its mouth, pulls away quickly, and yelps.

I don't know if Jacob knows who he is yet because he identifies himself in pictures and in the mirror as "be-be" and he looks behind the mirror for the baby.

Sunday, November 7, 2010


Jacob began initiating the word help last week with the sound "buh" - his pronunciation for the ending of the word. He has also added "bah bah" (bye bye) and "bee" (please) to his words. For many words, he makes multiple sounds for multiple syllables like tractor which he said last week but only a few times so I forgot what it sounds like. He is more willing to take risks imitating what is said to him probably because we are more able to recognize what he is saying when he initiates a word. Speech must be frustrating if nobody knows what you're talking about. Why bother talking then?

Thursday, November 4, 2010

Breathe Easier

Jacob needed only two doses of albuterol today compared with four or five doses per day since we were discharged from Hasbro last week. Since albuterol is a stimulant, a welcomed side effect has been a wide-eyed, awakened Jacob. His anti-seizure medication, depakote, is a depressant and we've always been concerned that it dampens his personality and his cognitive abilities. This is one of the reasons for surgery - to get off the depakote. Jacob's second dose of albuterol today followed about fifteen minutes of him laughing and squealing and "running" and then he was coughing and breathing quick and shallow. The respiratory therapist at Hasbro said that laughing, as well as crying, causes us to take deep breaths, exactly what the lungs need to do in order to clear out the remains of a pneumonia infection. For the first few days after we were discharged, I held Jacob almost all of the time because walking brought on an asthma attack. For the last few days, I have been able to play with him for short periods of time the way little boys like to play.

The quarantine is in effect until December 22nd. I requested leave from my employer to be home with Jacob while he recovers from pneumonia. Since he is susceptible to recurrent pneumonia, he will not be able to attend daycare until after surgery. Jacob's daycare director has graciously offered to reimburse us for the weeks that he is at home. We are so grateful.

Wednesday, November 3, 2010


Already Jacob is doing much better than when he came home from the hospital the first time. I am keeping my fingers crossed that he will get through the next two weeks without incident. I am only allowing him to be with Matthew at this point and no other children. Jacob has to come with me to drop off and pick up Matthew at school but I don't let him get close to anyone and I wash and disinfect his hands if he touches anything. Phew. And I thought I was paranoid before... My father recommended that we get surgical masks for people who visit the house so be forewarned. My poor mother has been really sick and I think she may have caught it from Jacob when she came to see him in the hospital:( To put this in perspective, Jacob was on five medications for the past week - 2 antibiotics, 2 inhalers, 1 oral steroid. Now he is on 1 antibiotic and 2 inhalers. Plus his anti-seizure medication. He's also on Lucky Charms, grilled cheese, vanilla ice cream, tortilla chips, and milk. (We are going to have an evaluation with the Feeding Program at Hasbro because he refuses to eat fruits and vegetables and just about everything else.)

Tuesday, November 2, 2010