lookin' good

On Friday, I found Fergus by the therapy gym with both his speech therapist and his physical therapist. They were doing all sorts of things with him including trying out smells. With his trach open, he can't smell so while capped, they let him smell a variety of things. He reacted the most to garlic (which he used to eat a lot), a bit to vanilla, and a bit to peppermint (all of which he has had before). He showed no reaction to smells of foods that he's not eaten before. I was so excited to hear that he remembers something from before. Here's a picture of him smelling vanilla:


Fergus saw an ear, nose, and throat doctor yesterday to make sure that there was no scar tissue making it hard for him to breathe. There isn't. He just simply gets scared and needs to get used to the harder work of breathing through the nose and mouth. We'll continue capping and as soon as he can easily be capped for 24-36 hours, they'll take it out!

We are getting settled into the new house. It's a nice quiet neighborhood, close to everything. Grandpa, Aunt Rachel Lockerby, and Aunt Faith helped us move in. Here's Faith holding Fergus after the hard work:

Thanks again for all of your comments and prayers. We'd be lost without you. Please continue to pray that he can keep capped for a long time with no problems. Any prayers for normal mobility would be greatly appreciated. He has a hard time still with us working with his arms. They are very tight. Thankfully, his hands are much better.

Over the weekend, as I rocked him, I noticed he wasn't tired. He was simply wide awake and content sitting on my lap. I asked for some books and started to read picture books to him (I've been reading chapter books to him before now - because he didn't seem to want to look at anything). He loved it. Now, I bring picture books with me every time. He will even stop crying if I just show him a book.

With much gratitude and love, esther

doing well

Here are some of the pictures I took while he was capped and very comfortable.

I'm heading over there now.

Please continue to pray for his full recovery. As exciting as all of this is, we are still overwhelmed by all that is happening. It is hard to keep my mind straight about what to do next. Often I simply pray that God would show me the next step.

There is a song by the band U2, "Walk On" on their album "All That You Can't Leave Behind" that throughout the last couple of months has meant a lot to me, reminding me to keep walking on. In fact over the past several years, I have become fond of this song, through many sad times. Here are some of the words that have comforted me:

"And love
Is not the easy thing
The only baggage
That you can bring
Not the easy thing
The only baggage you can bring
Is all that you can't leave behind


And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

....
And I know it aches
How your heart it breaks
You can only take so much

Walk on
Walk on"

With Psalm 23 as my constant reminder to Gus of God's faithfulness, we walk on. "The Lord is my shepherd, I shall not want. He makes me lie down in green pastures, He leads me beside quiet waters. He restores my soul. Yea, though I walk through the valley of the shadow of death, I will fear no evil for you are with me...Surely goodness and mercy will follow me all the days of my life and I will dwell in the house of the Lord forever."

gratefully, esther

amazing

I was gone for 4 days - to a wedding and then to pack up our old house. I came back and went to see him in the early morning. I sat holding him, rubbing his back and noticed something was odd. There is absolutely no curve left in his back. I was so shocked I had to keep lifting his shirt to make sure. His back is completely straight and normal. He is also starting to move his legs a little and relax them normally (not just straight and stiff). As well, his capping is now going great. He complains and whines, sometimes getting angry but his breathing is fine and his oxygen looks great. As well, he has grown again. He is still a bit in size 3 but 4s are easier for pull-over shirts. Right now, it seems that all Fergus really wants is to be held. He loves cuddling (as he always has).

We are doing well. We are a little frazzled with moving and trying to keep up with everything. We will be getting the truck this weekend to finish the move. We now have a larger vehicle thanks to James, Matt's brother. It is large enough to accommodate a wheelchair for which we are all relieved. Our new address is 4430 Treadway, St. Louis, MO 63134. We are just 5 minutes from the airport - just let us know when you'll be dropping by and we'll pick you up!!

Our older kids are truly blessed to have their Aunt Deborah helping us out. She is taking them on a week long trip to North Carolina to the beach to be with my parents and other family. Please pray for a safe trip. They are so excited and Matt and I are so jealous. :)

We had a wonderful time at Jen's wedding last Saturday. It was very encouraging to see everyone. The support all of you have given is overwhelming. We feel so undeserving but we don't know how we would do any of this without you. Our whole family is surrounded by your prayers. Thank you, esther

(since I know where the library is now, I'll come post more - we don't have a computer at home that we can access the Internet with)

RECAP

Today the doctors decided to try capping Gus' trach again while they were there to try and figure out what what was causing him to struggle to breathe. Instead they capped him this morning and he did fine with it! He kept it on for about 5 hours then he got a little bit fussy and they took it off. If all goes well they will do some tests on him tomorrow and hopefully take the trach out soon. Please pray that he will not be so frightened by being forced to breathe through his nose and mouth. Thank you all

fresh air

Yesterday and today, the boys had a chance to push Fergus around in his wheelchair. Gus liked it a lot yesterday but the sun was a little too bright today so we kept him in the shade as much as possible. The one thing that kept him happy today was me holding him in the sling. I ended up holding him almost the whole day.

Tomorrow, they'll try capping him again (with his doctors there - since they weren't here before) and we'll see what happens. Please continue to pray. Thank you, esther

on hold...

Capping is on hold for now. We don't know why he has such a hard time breathing in. Tomorrow, we'll have a better idea what the doctor wants to do (possibly visit an ear, nose, and throat doctor to see if there is any scar tissue).

Fergus definitely wanted me to hold him a lot today. He melts in our arms. Both Ian and George helped me push him around on a walk outside. It was really fun. We are enjoying seeing him focus and look around at different things: leaves on the trees, flowers, tall grass.

His back is getting straighter. Please continue to pray for a straighter back, better mobility, ability to move legs, relief from teething pain, and an easier time breathing. We know he can breathe and swallow, but don't know why he freaked out with the capping.

again, thank you for being faithful to us, esther

capping

Here is Fergus with the PMV on. He was absolutely fine with it on but once they tried the actual capping, he struggled. The cap looks the same as the PMV except that it is solid red, and he must do all of his own breathing and swallowing. They tried the cap yesterday in the morning but had to take it off after just 3 minutes. His oxygen was dropping, he started posturing (arching his back, straightening his arms) and acted like he couldn't breath well. After an early morning trip to the zoo (for an early celebration of Ian's birthday), we went to see Gus. He was fairly upset so I held him. While holding him, the respiratory therapist capped him and he did alright. He breathed fine, kept his oxygen strong, and coughed and swallowed well. He still didn't like being capped and when put back in his bed, he couldn't tolerate it. One of the possibilities of why he is so upset right now is teething - he has 4 teeth coming in all at once and if the nurses don't realize it, they don't give him anything for the pain.

I saw him this early this morning and after an hour, he was tired of me. I held him until he was too fussy (when nothing I do calms him down) and then put him back in bed, where he fell sound asleep right away. I left to come back to the kids and head to church. Here's a picture of him the other day laying over top of the 'boppy': (he loves this position)

I finished a couple of squares for his afghan (the blue is a lot brighter than this picture):

swallowing!!

Today, Gus had the PMV (the valve over his trach) on all day and coughed, swallowed, and breathed really well. Tomorrow they start capping the trach. Please pray that he continues to do well. God is gracious and kind to us.

Tomorrow, I will have a meeting to discuss his care until he comes home. I'd appreciate your prayers.
thanks for remembering us, esther

capping

Today, the respiratory therapist put a Passy-Muir Valve over Fergus' trach. This valve allows people to breathe in through the trach but only breathe out through their mouth or nose. It allows those with a trach to talk and helps with swallowing. He did great. He will wear it most of the day tomorrow and if he does well swallowing his drool and other secretions, they'll cap it by Thursday. They'll trial him with capping for the next few days and we all hope to have him decanulated (taking the trach out) by early next week!

Please pray that his ability to swallow completely returns. Having the trach out would mean so much before he comes home.

By the way, it was great to hear his voice!! He's grown so much - 4-5 inches since the accident and now I need to go shopping for size 3T. He's already too big for the 2T clothes Patty (a nurse who loves him) found for him, only a few weeks ago. He also continues to teethe - he has 3 teeth all coming in at once.

I'll post a picture of him with the trach capped as soon as I can.

thanks, esther

an evening stroll

On Saturday night, Matt and I took Fergus out for a walk for the first time. We waited until the evening, when the day was cool. Putting Fergus in my sling, we walked around the Ranken Jordan walkway in the back, showing the different plants and trees to him. He loved watching the leaves move in the wind.

Last night I was able to straighten his back against the bed (for the first time) while doing lots of stretches. He is still a bit stiff but I was able to get him to stretch a little further. To help distract him, I turned on his mobile over the bed and he watched the animals go round. Today, he will get his trach changed again to a smaller size and his morphine dose will again be reduced.

Please keep praying that he will move his limbs and continue to heal. thank you! esther

slowly waking up

Sorry for the lack of news this past week, I was worn out each evening and went to bed early. Looking at this past week, it seems that Fergus is slowly waking up. His morphine dosage was reduced again but because it was such a small amount, it went easy. He is becoming more alert and noticing his surroundings more. He is looking around and trying to focus (even looking cross-eyed a few times at us). He loved looking at the bubble lamps in the relaxation room and anything I'm crocheting with bright colors. He still sweats a bit, and is sensitive to noise.

On Thursday, I changed the trach out to a smaller one. He is breathing really well with it. Next week, we'll change it to the next smaller size before testing his ability to breathe without it.

This past week he got a back brace. It helps to pull his hips forward and cause his spine to curve in a natural way. When he has it on, he loves it. Getting it on him is another story - he arches his back if you move him and then he slips around. The doctor in charge of his therapies only wants him to wear it for 6 hours a day (he said the muscles will get weak if he wears it too much).

I also received the answer about the hyperbaric oxygen treatment (HBOT) therapy for Fergus. The doctor did research and found that it was too risky to put Fergus through it. He printed off the report (which was government based) and kindly brought it to me today to explain his decision. In studies and research done, a high percentage of brain-injury patients had pulmonary difficulties as a result of HBOT. I am grateful to have Gus at a hospital that seriously considers what I ask about and graciously and thoroughly answers me.

As far as what therapies they are considering, he explained to me that what has consistently worked well for brain-injury patients is a home environment with all of the therapies included. The sooner we get him home, the better. We will be able to work out day therapy options for the future.

As far as chiropractic care, the answer given was that the risk factor seemed too high. They are nervous about it. I explained that each time, his back was straighter and he was relaxed - two things that they are always trying to accomplish at Ranken Jordan. The doctor said she would try to see what needed to be done to let a chiropractor see Fergus. If not, we'll wait until we get him home.

We are moving!!!! We are signing the lease this next week for a house only 15 minutes from Ranken Jordan. It won't be ready for us to move into yet: it is still getting new carpet, flooring, etc. done. It is in a nice, quiet neighborhood, with young families and close to a park.

Thank you for praying for us. Your support is felt continuously.

Please pray for our children and their Aunt Deborah as they travel this weekend back home. They will be back with us by Tuesday next week.
Please pray for Fergus, that:
*his back would be straight
*his hands fingers would straighten out with his wrists straight
*his feet to flex and extend normally
*his legs would move

gratefully, esther (who although drained, is excited)