Thursday, October 31, 2013

Happy Halloween

This year its a joy to see Bryce in his costume, playing with friends. Pooh and Tiger look out!


 I love my little man. He is such a joy. Thanks to everyone who came to our little party!

What a wonderful afternoon of fun and being with friends.  It was nice to see our friends from Albany and meet new ones as well.

It is a blessing to live in a small community - walk to the park, library and play in the leaves. 

He loves to point and learn about the colors of trucks and cars. 

Wednesday, October 23, 2013


 This has been one of the most memorable Autumn ever.

My cousin and her family came to visit - we've had play dates and most exciting of all, we went to the pumpkin farm. Brye has had the time of his life ad I as a mama have never been happier seeing how excited he gets at the farm. We went to two farms so far, and next week we will go again.

Nurse Julie assisted me with transporting  his oxygen equipment and helping with the g-tube feedings. I can be a mama when she can be the nurse. Its great!!. Nurse Julie and Nurse Jean are now part of our little family. We are so grateful and we love them so much.

A single mama note: Last week I mowed 9 yards and a church and planted more than 15 shrubs at work. I love working again even if its just landscaping, I have enjoyed providing for my son and being able to get him some boots and with gifts I have been able to provide clothes and toys for his age. I want to teach again but the its hard to get back to being at the college level after taking so much time off to care for my son.  I am however, thinking of a slight career change, and becoming a respiratory therapist seems like a great job for me.

Bryce, like his mommy, loves to play, sing songs, and be outside.

We have so much fun and he is communicating much more with words and sign language!! He signs mommy all the time and I give him hugs and praise each time. He signs mommy when we are playing games, he signs ball more when he wants to play  catch again or just watch the ball be thrown. He can sign "thank you", "please" "more" "daddy" "ball" "help" "drink" "eat" etc. Our friend too, are pleased to be able to enjoy time and communicate with sweet bry bry.

This is a Bryce view -
One of the most precious times during the day besides making him smile and how he communicates with me, is snuggling in the morning and after nap time. He loves  it when I play guitar before he falls asleep. We love looking at each other in the morning and talking  with our eyes. He likes to touch my nose and I touch his nose and we communicate in non verbal signs, motions, he laughs and I laugh, and we so happy to have  baby and mommy time - though he is becoming a toddler now....oh how time flies.

Our friends and folks here in the community are so helpful and supportive. My church is an amazing support and my new friends are also gifts and angels of God.   I am blessed to continue to have many good friends in my life and make even more friends wherever we go.



Below is Monday night Football with RJ and Steven. The his new uncles are really are so sweet with him. Also Lydia, the family therapy dog sure does a good job helping us out - caring for Bryce and protecting him.  Both dogs have learned how to bring back balls and they know when to come when he signs come. Bryce completely loves the puppies.  He even adopted Noodle's (the other puppy) stuffed animal baby Clifford.

 In the picture to the right, Bryce is doing tummy time and he can lift his legs up on his own. He understands everything. I say when we talk during our exercises.

He really enjoys "up" and "down" exercises with his legs and arms. He also can reach up in the bathtub to touch the shower attachment, he can pull and push toys with his right arm, and he physically is doing super well and can even touch his toes again. Since August, his head seems to be lifting more and he often has more energy during the day.

The doctors said when on bipap at night, it might give him more energy during the day so I am very glad I chose to put him on bipap in June.

Bryce is my little Da Vinci - his drawings are amazing. He is such a good little artist. I use little markers because they are easier than crayons.  Also, he is a good little reader. Whether its pictures in a book, flashcards, cell phone, or memory card games, he points to pictures says "uh" which means what's this mommy? and I respond oh, that's a car, or that's a book or in the game below, that's Eyore, Tigger or Pooh Bear.  Bryce loves sensory activities such as play dough, painting with food, crafts, and doing new activities.

 Part of our daily routine and preventative care is using the cough assist and suction machine. We do cough assist first thing in the morning, sometimes after nap and always before bed. Then we also have to get the extra secretions from his mouth. He actually tells me too, mommy I want suction on my nose and sometimes after we brush teeth and after cough assist  signs to me and tells me with his sounds that he wants the suction machine. We do his nose and mouth sometimes 3-4  times a day if needed.  Bryce is so great at the machines.  He likes the wand to the right in the picture.

My sweet boy, now has a new baby doll that he likes to care for and he does the cough machine on her and he snuggles her before nap and bedtime too. He still loves his baby pooh bear and baby frogs but the baby doll seems to help him cope with his routine and he likes her around as his little buddy.

Actually, I have learned much when Bryce sleeps thanks to my nurses. When he has his sleep apnea or other drops in his pulse ox - like from 98 to 85 all of a sudden or a drop to 90 and then it pops back up, its because I have to reposition him be on his back or on his left side and sometimes putting baby doll or baby frog under his arm helps open his chest and brings his pulse ox back up to 98- It is so strange to see such a drop even when he is on the bipap machine. However, Pulmonologist. Dr. Mcquestin instructed me to call 911 only if he drops to the 80"s for 20 min.  If he drops to the 91 then I use his albuterol, suction, cough assist, and nebulizer then his O2 tank (oxygen canulla) and if I have to use the ambubag, or after 20 min in the 80's I call 911.

We are so fortunate to live in small community of Lake Oswego. Our neighbor is an EMT and we are soon going to meet the folks at the fire department.  I am feeling really good about my new community and my new friends because its so important for  us to have such a great social and helpful community.

This week Bry Bry for the first time in months was at 100% in pulse ox sats.  This is what any SMA mama prays for on a daily basis. At night and during naps I put the pulse ox machine on his toe to monitor his stats. At night he is on a feeding pump of 49 ML of formula for 10 hours and I wake up at night to refill the formula and change toe pulse ox for comfort. Sometimes I am up 4 times a night to reposition him and or change diaper. Bryce can roll to his back but he cries to be rolled to the other side. I am very fortunate to have a beautiful home to live in. Martha gave us the downstairs bedrooms, but I keep Bryce next to me in  his toddler bed because I sleep better when I listen to him breathing, the sound of the feeding pump and bipap are the normal sounds for us to fall asleep too.









Wednesday, October 16, 2013

October Fun

The fall has brought such great weather and lots of love to our new home.

Bryce  has learned new tricks and is becoming stronger in many ways. He is very adjusted to the breathing machine (bipap at night) 

Our self portraits downtown Lake Oswego
first picture all by himselfHe signs very well "mama"  "more" "please" "thank you" "ball" turn" - this week he puts two words together well such as mama more please. Its great.   He still likes to watch videos but we do more crafts now and games. He loves flash cards He points and says eh to something and then I respond what it is. For example, books, magazines, or boxes -

He loves his books. We read constantly.  We go out as much as we can while the weather is still great. The neighbors have had fun trucks coming by over the past month so Bryce loves trucks.

New exercises. Bryce's idea with towels