We're having dinner together- the last of Thanksgiving leftovers. Dad is out of town for work. We're talking about our days. I'm spoon feeding LJ. He signs, "more potatoes and sauce". Then, "more smoothie. My turn." Out of the blue Nate says, "I want a brother who can talk." First I stare at him, stunned a bit. Then I rally my voice and say "he can talk, honey, he just talks a different way." He seems to let it go. I hug my boys.
Something has happened and I can't get it out of my mind. Why do I do this to myself? I can't accept it and be at peace with it. At the end of the day, these boys are all that matter most. In another life I will learn to let things go. In another life I will be okay with the good, the bad & the ugly.
Tuesday, November 29, 2011
Friday, November 25, 2011
Thursday, November 24, 2011
Turkey Turkey
Wednesday, November 23, 2011
Where We Are Now
Just a quick update regarding LJ's pulmonology appointment. His lungs sound better! Yay. He doesn't need a follow-up til February unless it is a tough virus-causing winter. We have one more day on the antibiotic and his secretions have lessened. We do, however, need to follow up with the ENT. LJ's left ear is clogged. Though the ear tubes are in place, this could be cause for many an ear infection this winter. That's not good.
On another front, I am happy to report that he is up to a whopping 13.9 kg. This is approximately 30.5 pounds!! By last Thanksgiving we had just begun a whole foods, blenderized diet. I can't believe its also been a year since LJ discovered his new love in life, pizza. We've come a long way baby! LJ has been completely weaned of his g-tube since August 1st, 2011 (meaning, no water or food has been supplemented using his feeding tube). We got the "all clear" from the GI folks for the g-tube Mic-Key button to be removed PERMANENTLY in March if all goes well through the winter! Hasta la vista gtube. It's been real. But we're ready to see you go ba-bye.
Tuesday, November 15, 2011
A List of Gratitude
It hasn't been a great week so far. Both boys are sick. They're on antibiotics now (Thank you Dr L!). Nate is home from school playing legos. They are both coughing and LJ will needs to visit the Pulmonologist because he has tracheomalacia and when he gets sick his chest sounds all crackly and not so healthy. Some appointments that were supposed to happen for LJ had to be postponed due to bureaucratic paperwork with insurance. And so we wait and see when the referral will get denied or if we can reschedule the appointment. Off to schedule the pulmonologist! I'm worn out and hope everyone sleeps better tonight...or at least affords me a nap today.
Thanksgiving is next week. Next week? It's crazy. I am trying to plan our menu for our holiday meal and make the grocery list. So I also made a list of things that I'm thankful for. (Alternately, it can be looked at as a list of things that makes me happy). It's times like these that it's good to reflect on how much progress we've made and how big our hearts have grown.
1. My family
2. My friends
3. My home
4. Snuggles
5. Kindness
6. The beach- the surf, the sand, the smell of coconuts..everything about 'em
7. Sunshine
8. My yoga practice
9. Walks
10. Sunsets
11. Wine
12. Coffee
13. Good books
14. Belly laughs
15. Weekends
16. Guacamole (chips optional)
17. DVR
18. Blueberries
19. Long, hot showers
20. LJ's iPad
21. Learning new things
22. Watching LJ pull to sit up
23. Tickle monster
24. Child's pose
25. Savasana
26. Making goofy faces
27. Playing in the sand
28. Yummy smelling candles
29. Pumpkin muffins
30. Looking through photo albums
31. Peace and quiet
32. A good night's rest
33. Jar of funny Nate quotes
34. Chair lift conversations
35. The sound of skis carving into the snow
36. Hot chocolate
37. Fires
38. Playing boardgames
39. Addicting puzzles
Thanksgiving is next week. Next week? It's crazy. I am trying to plan our menu for our holiday meal and make the grocery list. So I also made a list of things that I'm thankful for. (Alternately, it can be looked at as a list of things that makes me happy). It's times like these that it's good to reflect on how much progress we've made and how big our hearts have grown.
1. My family
2. My friends
3. My home
4. Snuggles
5. Kindness
6. The beach- the surf, the sand, the smell of coconuts..everything about 'em
7. Sunshine
8. My yoga practice
9. Walks
10. Sunsets
11. Wine
12. Coffee
13. Good books
14. Belly laughs
15. Weekends
16. Guacamole (chips optional)
17. DVR
18. Blueberries
19. Long, hot showers
20. LJ's iPad
21. Learning new things
22. Watching LJ pull to sit up
23. Tickle monster
24. Child's pose
25. Savasana
26. Making goofy faces
27. Playing in the sand
28. Yummy smelling candles
29. Pumpkin muffins
30. Looking through photo albums
31. Peace and quiet
32. A good night's rest
33. Jar of funny Nate quotes
34. Chair lift conversations
35. The sound of skis carving into the snow
36. Hot chocolate
37. Fires
38. Playing boardgames
39. Addicting puzzles
Tuesday, November 8, 2011
It's Not a Fluke
Tonight I'm playing Monopoly (the 1974 vintage where properties cost $100:) with Nate while LJ plays with Caroline. This is what LJ was doing for the second night in a row.
Monday, November 7, 2011
Monday, already?
Is it Monday already? I can't believe another week has flown by? Too much going on here. Over the last week we've been busy. Now that November is here, it seems as though things have switched into high gear. Our first snowfall of the season, LJ's Halloween parade (I think he was scared and he cried most of the time), Nate's Halloween parade, Josh in California for work, verbal behavior therapy, water therapy, therapeutic riding, seeing the Great Gatsby performed by the Washington Ballet with friends and Didi, meetings with LJ's speech therapist and physical therapist, scheduling future appointments, picking up prescriptions, a fitting for new orthotics, a long walk with a buddy, a coffee chat with another buddy and LJ had a playdate with a new friend (my yoga friend's daughter)...sigh. The weekend was also over-programmed. With Nate having two soccer games, my yoga teacher training all weekend and yesterday's Daylight Saving time change (which the boys did not allow me to recapture that lost hour) I'm feeling it today. Here's a bit more update for those inquiring minds.
Orthotics- LJ has outgrown these. Since his foot has grown, his arch has changed and his gait has improved he is no longer benefiting from the original DAFO's from two years ago. We had the orthotist cast and mold LJ's feet last week. Nate came along for the fun and he helped Noodles pick out some snazzy, new velcro straps and patterned foot pads. Hopefully the customized orthotics will be ready in three weeks. The new ones should also help improve LJ's balance and gait. Next up, shoe shopping to fit said new DAFOs :)
DMO Suit-Its working. Though LJ resists having it put on each day, once it is on, it is subtly changing his posture. He sits up strong and beautiful in his chair and his new It is remarkable how well he does immediately once it is taken off. He can hold an independent, tripod, seated position for a couple minutes. Prior to the suit, he was only able to hold himself up for a minute or less. One downside is the zippers can pinch the skin, especially in the groin area. As a consequence, diaper changes become apprehensive for LJ. The other downer is that the Gtube button keeps getting caught on the suit. It's tight and you have to be very careful when putting on and taking it off. Last week, his button accidentally got yanked out when taking the suit off. Balloon fully inflated got pulled through the hole in his tummy. He was not a happy camper to say the least. Nate was instrumental in helping distract LJ as it was re-inserted.
DMO Glove- The glove is not gonna work. We're bummed. LJ is still involuntarily fisting his right hand all the time- including when the glove is worn. It's never in a relaxed state. We thought we might be able to have the orthotist adjust the glove so that the fingers could be reinforced. The other idea we tossed around was tightening up the material of the glove to get a 30 degree wrist extension. Theoretically this might abduct his thumb which in turn would help allow his fingers to extend. In the end, the therapist and the clinical director agreed that the manner in which the glove's technology works was inciting LJ's palmar grasp- similar to when babies have a palmar hand grasp on a finger. The panel of material on the palm can't be removed so no matter what way the glove was manipulated it was not going to help LJ's palmar grasp. We have a follow up appointment with the therapist next week to see if we can get LJ a new splint casted and molded. This splint will not be functional (he won't be able to do anything fine motor when its worn) but rather will be worn at resting times sporadically throughout the day.
Verbal Behavior Therapy- Here was the latest chart from our manding sessions in October.
The good news is that we're happy to see the item requests and MO prompts increasing steadily throughout the month. The bad news is that LJ hasn't mastered some of the targeted signs we wanted him to learn. So we are keeping them on this months list of targeted signs. We're also changing this month's data collection. We are continuing the target mands daily but it will be less time intensive. Instead of tracking all his signs we are only collecting data on the 10 signs we are targeting this month. If we can track when Lewis does a mand/request using the proper sign 5 consecutive times he has mastered that sign and we can move on to a new sign.
The sun is shining this morning. My brain is spinning but I'm not complaining. We've got quite a lot planned for this week as well. I've got a plan and I'm looking forward to making ground on some fronts this week.
7pm announcement: LJ just transitioned from his knees and belly to side sit to a propped, tripod seated position all by himself!!! He did it 3 times in a row if not more!!! As I cried tears of joy, Nate ran and got him his own soccer medal from last year and awarded it to LJ. Melt. And lastly, Nate gave him a kit kat bar from the trick or treat bag. I'm blissed out.
Orthotics- LJ has outgrown these. Since his foot has grown, his arch has changed and his gait has improved he is no longer benefiting from the original DAFO's from two years ago. We had the orthotist cast and mold LJ's feet last week. Nate came along for the fun and he helped Noodles pick out some snazzy, new velcro straps and patterned foot pads. Hopefully the customized orthotics will be ready in three weeks. The new ones should also help improve LJ's balance and gait. Next up, shoe shopping to fit said new DAFOs :)
DMO Suit-Its working. Though LJ resists having it put on each day, once it is on, it is subtly changing his posture. He sits up strong and beautiful in his chair and his new It is remarkable how well he does immediately once it is taken off. He can hold an independent, tripod, seated position for a couple minutes. Prior to the suit, he was only able to hold himself up for a minute or less. One downside is the zippers can pinch the skin, especially in the groin area. As a consequence, diaper changes become apprehensive for LJ. The other downer is that the Gtube button keeps getting caught on the suit. It's tight and you have to be very careful when putting on and taking it off. Last week, his button accidentally got yanked out when taking the suit off. Balloon fully inflated got pulled through the hole in his tummy. He was not a happy camper to say the least. Nate was instrumental in helping distract LJ as it was re-inserted.
DMO Glove- The glove is not gonna work. We're bummed. LJ is still involuntarily fisting his right hand all the time- including when the glove is worn. It's never in a relaxed state. We thought we might be able to have the orthotist adjust the glove so that the fingers could be reinforced. The other idea we tossed around was tightening up the material of the glove to get a 30 degree wrist extension. Theoretically this might abduct his thumb which in turn would help allow his fingers to extend. In the end, the therapist and the clinical director agreed that the manner in which the glove's technology works was inciting LJ's palmar grasp- similar to when babies have a palmar hand grasp on a finger. The panel of material on the palm can't be removed so no matter what way the glove was manipulated it was not going to help LJ's palmar grasp. We have a follow up appointment with the therapist next week to see if we can get LJ a new splint casted and molded. This splint will not be functional (he won't be able to do anything fine motor when its worn) but rather will be worn at resting times sporadically throughout the day.
Verbal Behavior Therapy- Here was the latest chart from our manding sessions in October.
The good news is that we're happy to see the item requests and MO prompts increasing steadily throughout the month. The bad news is that LJ hasn't mastered some of the targeted signs we wanted him to learn. So we are keeping them on this months list of targeted signs. We're also changing this month's data collection. We are continuing the target mands daily but it will be less time intensive. Instead of tracking all his signs we are only collecting data on the 10 signs we are targeting this month. If we can track when Lewis does a mand/request using the proper sign 5 consecutive times he has mastered that sign and we can move on to a new sign.
The sun is shining this morning. My brain is spinning but I'm not complaining. We've got quite a lot planned for this week as well. I've got a plan and I'm looking forward to making ground on some fronts this week.
7pm announcement: LJ just transitioned from his knees and belly to side sit to a propped, tripod seated position all by himself!!! He did it 3 times in a row if not more!!! As I cried tears of joy, Nate ran and got him his own soccer medal from last year and awarded it to LJ. Melt. And lastly, Nate gave him a kit kat bar from the trick or treat bag. I'm blissed out.
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