daily work

Each day we have Gus stand in his stander, sit in his sitting frame, play with some toys, try some food (usually pudding at this point) and practice rolling over with belly time. His muscles, since the chicken pox (and a huge growth spurt) have been harder for him to control so he fights everything a lot more, even if he doesn't want to fight it. We might need to increase some of the medicine that calms those muscles down so that he can have more control. Here are the latest pictures of him.Please continue to pray for Gus. He has a hard time sleeping again and continues to lose control of his body temperature (sweats a lot, over heats, or gets really cold regardless of air temperature).

For those of you who are interested, I thought I'd post the latest our older children have learned in pottery (with their Aunt Deborah). They recently had a show-n-tell for Matt and I:

set backs

A couple of weeks ago, Fergus, George, and I visited the Delta Gamma Center for vision assessment. The assessor, Jo, is fantastic and Gus loved her immediately. Each time she talked to him, he looked at her and smiled. The evaluation lasted for over 2 hours and at the end, Gus was responding faster to the visual stimulation. I asked her what he could see and she said told me what he likes to look at. He apparently doesn't have any areas of vision that are completely gone. He can see colors, not just black and white and shadows. He prefers shiny, noisy, moving objects. Mylar is one of his favorites. Jo kindly gave him a few things to take home and he loves all of them but his favorite is a blue Mylar balloon. His ability to respond to the balloon and to control his arms to get the balloon (not with his hand yet) has improved over the past few weeks and has really encouraged us. His response to other toys has been much slower.

The weekend that followed, we visited friends in Memphis. We had a great time and Gus seemed a little sleepy, but not much out of sorts. On the way home, Sunday night, we noticed he was more upset than usual and I assumed he was teething and a bit tired from visiting. Monday morning I noticed he had chicken pox. I was hoping he wouldn't get them until he was a few years older. George and Rose also contracted them but theirs lasted for just a few days. Gus got a really bad case. For the last 2 1/2 weeks it seemed as if Gus had slid back developmentally at least a few months: he 'postured' (uncontrollable tightening of the muscles throughout the entire body) just as he had done in the hospital, even had a day of 'storming' (where he gets really upset and can't calm down regardless of what we do), and was unable to sleep for the first week (except for small naps of 15-20 minutes every few hours). It was very overwhelming to see him like this again. We were a bit shaken. I felt like I was grasping in the dark and finding nothing to hold on to. This past weekend, after the chicken pox was officially over, improvements started to happen. God heard my prayers. Each day since then, Gus has done better and better, although he is still regressed from where he was before the chicken pox. His 'tone' (when the muscles tighten too much) is still a little too much and he sweats a lot (not from heat but lack of control from his brain). When happy, he has returned to smiling a lot, with extreme ticklishness and responding well to any praise.

Today we saw the doctor overseeing Gus' therapies. He reassured me that this is very normal behaviour and that in the next week, we should see many more improvements.

We didn't want to take any pictures while Gus was in the worst of the chicken pox so here's the latest of him:

Thanks to the generosity of my sister Mary, we have the ability to update now at home and we can now access email. Thank you for your continued support even through my lack of consistent updating. Your prayers and support are holding us up.

better and better

Gus is continuing to do better. He makes lots of progress and then seems to plateau for awhile, which I'm told is common with brain injuries. This past week, we had an extra busy schedule. On top of the usual therapies, Gus had a 'swallow study' done and saw an eye doctor. Both visits were very encouraging. The swallow study, done with a radiologist, showed that his muscles for swallowing are all functional - just weak. We simply need to get them stronger. We've started to work on feeding him more often every day. It takes a lot of his energy and he doesn't do much else after that but sleep. Once he is stronger with swallowing, we'll work on liquids so that we can finally get rid of the G-button!!

The eye doctor as well had good news. He was checking to see if damage was done to the optical nerve during the swelling, but God protected it - there was no damage done to his eyes from the accident. The visual problems are all related to the brain injury. The next step for helping his vision is to take him to Delta Gamma, vision specialists. They can tell us if he sees double, just shadow, only up high, certain colors and not others, and so on. Our appointment with them is on the 13th of November. They will help us with strategies to improve his vision.

This past week, Gus is suddenly very limp (the drugs he is on relaxes the muscles and as he improves, they relax more and more). He isn't too crabby but he won't even roll over like he was. Please pray that the doctors realize the improvement made and will reduce his medications accordingly. They want to go slower with reducing medications but every time Gus has less medication, he does new things - it is always an improvement. If we need to wait to reduce them, please pray for patience on our part.

The kids all say hi to you. They love Gus and he adores them. They can always make him smile.

Thank you for your support. Without it, we would fall apart. Your prayers keep us going, keep our hope alive. Your comments mean a lot to us, even if I can't read them often, I treasure them when I do.

with hope and thanksgiving to God who hears our requests, esther

Gus is doing well. The latest news, this past week is his great progress.
Physically, Gus is doing more and more on his own. He is rolling over when he wants to (from his belly to his back) and learning to play more with toys. He is making more of an effort to hit the toys and activate them and enjoys the noise he makes.

His overall muscle tone is improved, more and more like a normal baby (which means he isn't too stiff or too relaxed). He is strong but we are working at home on exercises that encourage more movement (rolling more and crawling).

Swallowing is still difficult but getting better. The front of his mouth responds quickly (and he loves the taste of the food) but the back of his mouth still gags often.

Mentally, Gus is definitely doing better. He is understanding more of what is happening around him. He is smiling and laughing more and more in response to us just talking to him or picking him up. He is very attentive to whether or not we are around and instantly calms down if we just talk to him.
Medications are being lowered again this week. The doctor was very impressed with the work Fergus is doing (it is obviously him, not the medications doing the work) so he is dropping them lower and lower. We are thrilled. The hope in knowing that our son is doing so well, despite all of the odds predicted against him has given us wings this week.

Thank you for continuing to love us through your prayers and support, esther

more hope

Since Gus has come home, we've been fortunate to be 'adopted' by his nurse from Ranken Jordan, Patty. Patty and her husband, Pat, have invited us to their home and shared with us the pleasure of their garden. We have had so much fun working in their garden and visiting with them, besides the incredibly yummy food, that I wanted to share with you a few pictures.



Last weekend we made the 4 hour trip down to our old home in Alton, Missouri. Car sick on the way in...and on the way out. As usual, Gus hated the car ride and screamed in protest the entire way (he screams every time we take him in the car). We had a great time visiting with family and Gus adjusted a little to being in a new place with people he doesn't really know.
(He's a little tired here and in the middle of smiling...but wouldn't give us the whole one for the picture.)

Monday, we visited with the Fiorinos, really good friends living in Thayer (about 30 minutes away from Alton). Dr. Joe Fiorino is the chiropractor who has seen Gus before and each time, Gus is so much happier. He was able to check him out and adjust him (several times) on Monday. I cried with the result. Gus moved in ways he hasn't since before the accident. He was calm, happy, and content without us constantly entertaining him. The whole ride home that night was quiet - he was peaceful all the way. This past week, the difference has continued. He got his fussiness back again but he has continued to move more. The strength in his neck and torso suddenly increased dramatically. We are working on finding a chiropractor to take him to in the area (with Dr. Fiorino's help).

Other exciting news - we are expecting another addition to our family. I'm due to have a baby in early March 2010. The kids are very excited.

Thank you for your prayers. Please continue to pray for Gus' full recovery. We are praying right now for the right chiropractor in the area. We also are praying for a quick return of Gus' ability to move around more. He is frustrated at not being able to move much on his own. His vision is increasingly better - looking at everything up on the walls (not just a foot away from him).

God is good - He is restoring and increasing faith, hope, and love through your prayers. Thank you, esther

play time

(This was the best smile picture we could get for you...but we'll keep trying!)

Gus is smiling more and more now, at least a few times a day. Last Sunday he started to laugh and that's getting more and more frequent as well. Thank you so much for praying for us. It is so encouraging to see him enjoy playing with us.

His medications are being reduced some more since he is doing so well on less and less. He is also swallowing a little bit faster and he acts like he wants the food when he smells it cooking and we are at the table eating a meal.

His vision seems to be improving but I'll be contacting an organization here that can help us figure out what he can see (shadows, black-white, double vision, etc).

He is exhausting as he 'wakes up' (mentally and physically) so Deborah, Matt, and I often take turns playing with him, stretching him, and stimulating him with different things. Please pray that his brain continues to heal and that God graciously shows us the next step and how to keep going.

gratefully, esther

update at last

It's so nice to be able to write to you again. We are finally getting some sleep (just since this past weekend Gus started to sleep through the night - some of the nights) and we feel sane again. It's amazing how 6 straight hours of sleep can make you feel normal.

I'll do my best to sum up all of the things going on with Gus. Since coming home, Gus has been adjusting to all of us, our noise (or lack of), and the new environment. The first few weeks were rough. After that, he's relaxed a lot. In fact, he relaxed too much. Matt and I were worried because he was limp almost all of the time. I spoke to the doctor overseeing his therapy drugs and he reduced the amount of Baclofen 25% last week. [Baclofen is an antispasticity drug that they used for Gus because of his inability to control the over-reactions of his muscles. It apparently does not affect cognitive development but does over-relax the muscles. Taking him off of this is a huge step forward.] The past few days was similar to watching Gus come off of morphine except that instead of his mind waking up, it was his body. He started to move more, sleep better, and tolerate new things even better. He started to swallow easier as well (we are now giving him very small tastes of applesauce each time he is hungry and he wants more and more).

Last week, Gus also received shots of Botox in his arms to relax them. Already, we are able to completely straighten them and do even more therapy with him.

The greatest thing for me was last night: I came inside the house and sat down beside him while he was looking at his Aunt Deborah. I said hi and he smiled. I didn't believe what I saw so I said it again and he smiled again at me! Not a half smile but the exact same smile he always had - big and happy. This is the first smile in response to anything. He's only smiled in his sleep so far (and then it was only a half-smile). I cried a lot after that. I felt as though God was truly giving my son back to me. Ah, that God is so good to us yet who are we but as dust? His love is amazing.

Thank you for remembering us, esther

a bit sleepy

Fergus is doing better and better, adjusting to home. I finally slipped away to come to the library and update you on what is going on. He is finally used to the lack of hospital noise in the home and is resting more and more. His teething issues, as for all babies, keep him crabby at times but when there is relief, he's fine. We are doing all the therapists say to do - the ones at the hospital and the in-home therapists (therapy 3 times a week). He is holding his head up better, swallowing easier and faster, moving his knees more, and if put on his side, he will roll unto his back. These seem a bit insignificant but each little step is a milestone for us. The developmental stage that he is at is newborn for most things. I am now trying to incorporate all of the stimulation he needs along with his appointments, splints, feedings, and medications. Life is definitely becoming a bit more normal for us with him at home.

with a grateful heart, esther

No Place Like Home

I'm writing through a few tears that just won't stop. This past week we've been running between home and Ranken Jordan, getting ready to take Fergus home. I've cried many times with joy, thinking about him at home but the day finally arrived yesterday. The joy of bringing a child home is like no other. I was elated all day yesterday and then, after we settled him in and unpacked all of his medications, feeding 'stuff', and other miscellaneous things, both Matt and I felt the exhaustion hit us from the past few months. We've been waiting for this day.

Last night was a reminder of all of the work the nurses have been doing for him on a daily basis - it's a lot. He didn't sleep well and kept Matthew and I up most of the night, but overall didn't seem too discontented: home is a lot quieter than the hospital and he knows us. He loves to be rocked and the kids have already helped out with taking care of him. The kids love to make him happy. In this picture, Ian is playing with him while his feeding tube is going. Fergus has started this past week to really enjoy being played with. He still loves looking at books, having us read to him, and watching things move slowly (like leaves on a tree, or a ribbon on a balloon) but now, he likes for us to use stuffed animals to make noise or touch him.

Thank you for all that you have done for us. We would not be able to move ahead like we have without you. God is gracious to us and has shown us faithful mercy and love through you.

Please continue to pray for his ability to move around. He gets bored and frustrated not moving around and we try to encourage him to move more by keeping him on his belly on the floor (he can move his arms and legs a little).

I'm heading back to talk to the nurse that will oversee our home care. Thank you for all that you have done for us.

with more gratefulness than can be expressed, esther

his trach is gone!!

My God is so good to us. It was wonderful to hold Gus again without watching out for his trach. He is obviously more comfortable. This picture I took just after they pulled the trach. He was very content.

Thank you for praying!! We don't have a discharge date yet. They will watch him carefully for the next few days and sees how he does before deciding when he can come home.

with incredible joy, esther & matt

soon and very soon

Fergus is doing well. He has been capped since last Wednesday and doing great. He had his testing over night on Sunday to make sure that he is breathing well and he did fine. They are now waiting from the ear, nose, & throat doctor to say that he thinks it is okay to take out the trach. We hope by tomorrow to have it out. Then, we can plan on him coming home before two weeks are up. Deborah, the kids, and I are scurrying around the house to get it ready for him to come home.

We are all excited and yet really nervous. He's not a normal baby anymore and we aren't sure how different it will be. Any prayers about adjustment and continued healing would be appreciated.

Thank you for your prayers, gifts, kindness and mercy to us through all of this. God has supported us and held us together through your acts of love and kindness. God has been and continues to be merciful to us.

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)

same

It has been almost a week from the last post but little has changed since then. He is more irritable and sweaty but more aware. He definitely seems to be better if we are there and he hears our voices. Because the storming seems to be at an end (or close to it) the doctors want to start working on taking out his trach within the next week or two. They will do lots of tests to see if he can breath well without it and if he swallows his own secretions. He wasn't swallowing well in Springfield so we're praying and hoping that he can now. He seems to be waking up slowly, becoming a bit more active, a bit more alert, a bit more upset, a bit more happier - he smiled at me a couple of times the other day and at a therapist as well (while awake).

My prayers have remained the same: that God would restore him fully, as he raised the widow's son through Elijah and that God would crown him with love and compassion, fulfilling his desires with good things, so that his youth may be restored like the eagle's. Thank you for your faithfulness to us and Fergus. Please continue to pray.

Gratefully, esther

good news

We found out Sunday that his sweating was due to a reduction in the morphine. He did better Saturday night and Sunday. Today, he is sweating still but seems to sleep better and deeper. He is more aware and awake in between naps. He is moving more, too. His shoulders are moving (almost as though he is trying to roll over)but his legs don't move except when upset (and then, he tends to just straighten them out). We are glad to see him come off of morphine - one more step closer to getting better.

One of the nurses' assistants told me the other day that he calms down really well if she tells him that, "Patty, Mom, and Dad will be here in just a couple of hours." Apparently, he knows our names.

thank you for being so faithful to us, esther

Pretty rough

Last night was pretty rough. I was there for a few hours and then switched with Matt. He stayed with Fergus until 2 in the morning. Today, Gus is sweating a lot and it seems that we can do nothing to calm him down. Please pray. God bless you, esther

Yesterday Fergus had a very calm day, but last night was a little rougher. I called in the evening to see how he was and they said he was upset so I went over to see him. He was arching his back, sweaty, and overall not comfortable. I picked him up and he melted immediately. I held him, sang to him, and rocked him as he snuggled into me and fell soundly asleep. He is responding really well to the people he knows now. If he has the same people over and over, then he gets used them, and snuggles into their arms.

The nurses and nurses' assistants he has on a regular basis have done an amazing job of figuring out what he likes and how to calm him down. He recognizes them and their voices. One in particular, Patty, has really blessed us with how much she cares about him. She goes out of her way for him all the time. In fact, he likes and knows her better than he does Matthew or I. All she has to do is speak to him and tell him 'it's okay' for him to calm down. We are so grateful that he responds so well to her.

Fergus is growing and growing... He is now wearing a 24 month size (he's only 14 months old) and continues to cut more teeth in. He had cut two in while in Springfield and now he is cutting two more in. Just looking at the pictures of 2 months ago, I can tell he is growing big.

Please continue to pray for:
*his back to be straight
*loose joints, muscles, and tendons
*no more storming
*wisdom, knowledge, and skill for the doctors, nurses, nurses' assistants, and therapists that take care of Fergus

*Please pray for our children back in Alton. Life has been shaken up for them a lot in the last few years, let alone with what has happened with Fergus. They need to be with us soon.

thank you for being faithful, esther

calmer days

Saturday morning, Matt and I visited with Fergus and then left him to visit our other kids at home. It was the first time that I had been home since the accident. I was scared in some ways, afraid of being in the place where it happened but when I got there, it wasn't so bad. Instead, it was very relaxing to be in our own 'space'. The land is so green there, everything is grown so tall and lush. The animals are doing well and the kids looked so good with ruddy cheeks, scraped knees, and big smiles. We only stayed until Sunday afternoon, parting with tears and promises to settle up here together soon. We saw Fergus Sunday evening and learned that he did well while we were gone. In particular, music constantly played at his bedside and the 'spa' treatments in the whirlpool bath have made a great improvement (of course, without all of his medications, those would help little). It was such a relief to know that he did so well without us always being with him.

Today, I was with Fergus for an extended time. One of the first things on his agenda was getting fitted for new hand splints. It was quite a bit of work because he hates anyone doing anything with his hands and arms. After that, they tried him in the 'stander', a brace to help his body get used to the feeling of standing. He was alright in it, at a 45 degree angle for about 15 minutes but he didn't like being out of my arms to do it. Later, I took him to the 'relaxation room' for a massage. As soon as we entered it, he was thoroughly happy and stayed like that the whole time we were there. He waited to get upset when I had to put him in his bed back in the nursery.

Monday, Matt had a job interview and was hired. He'll start next week working for a small local painting company here in St. Louis. The next step is finding a house.

Good news, thanks for praying:
*Matt has a job!
*Fergus is doing well with his medications - they are not taxing his body too much.
*Fergus is more alert and aware. You can tell him anything you want and he won't calm down but if you say "It's okay" he starts to chill out.
*Fergus is recognizing people (his nurse Patty, me, his dad), places (the relaxation room), and words ('mom', 'dad', 'it's okay).
*The kids are doing well back at home with Aunt Deborah.

Continue to pray that Fergus':
*back is straightened
*joints become looser
*arms and hands become easier to work with (he hates to have them messed with)
*doctors and nurses know what is best to do for him
Please pray that we settle soon in a home nearby.
with much gratitude, esther

spa time

Because Fergus enjoyed his bath so much, the nurses decided to try him out in the whirlpool tub! He loved it. He almost fell asleep in it several times. For the first time, we saw him let go of the nurse's finger and then grab it back again. (We've not seen him move his fingers or hands purposefully yet.) He slept really well last night, only waking up for wet diapers and needing a new position. There was no storming. So far today, he's done well too: no storming, just a little bit of fussiness with a wet diaper.

Again, thank you. Your comments and prayers are so encouraging!!

esther

when the storms are over

I spoke with one of the doctors yesterday. I asked quite a few questions and she graciously answered them all. One of the things I have been a bit nervous/anxious/overwhelmed by, is the storming that Fergus is going through. Everyday is so draining with his inability to control his reactions. The idea of dealing with this everyday when we take him home was depressing to say the least. The doctor encouraged me yesterday, explaining the processes of storming and that it will not last forever. In fact, it will hopefully end within a month or so. When it does end, the medications will start to be reduced and the therapies will be able to go much further.

It will be at that point that the doctors can think about whether or not he needs a trach. The apprehension about his airway is usually during the storming episodes. When he doesn't storm, his breathing sounds really good. So, to be on the safe side, after the storming has stopped, they will consider testing Fergus' need for a trach. The trach will not be removed until they know for sure that his airway will not be compromised.

Fergus was doing better yesterday, especially while being held. Last night he enjoyed taking a bath for the first time. He cried loud and hard when taken out, but didn't lose control. - In fact he was simply angry at us and let us know! It is so good to see him behave like this. I was encouraged.

thank you for being faithful,
esther

encouragement

Thank you for your encouraging comments. Yesterday Fergus did really well. He was easily calmed throughout the day and he had periods of good, deep sleep. He was so relaxed when I saw him that his positioning was different than usual (he usually looks to the right, has one foot flexed, the other pointed, and his hands curled up over his chest). I saw him sleeping facing the left, both feet just slightly flexed and his hands were more open and to the side.

Overall, Fergus is doing better. It is hard for us to see that from day to day, especially with the bad days that are so hard to get through. He is more easily calmed down and doesn't overheat quite as much. He still sweats profusely (but he's not hot), arches his back, and tightens his limbs. I read through a list of things to help typical dysautonomia the other day. Almost all of it applied to Fergus: bending at the hips (sitting up), cool temperatures, quiet atmosphere, dim lights, soft voices. Unfortunately, he is in a nursery where noise can only be controlled so much. The doctors think that in the long run it is for the best (so that when he is home he won't freak out at noise) but it is harder for him now.

I have asked the medical staff about hyperbaric oxygen treatment chambers for Fergus (on suggestion from my niece Chrissy DeCarlo). They have sent other kids to be treated from Ranken Jordan before so I hope that Fergus will also, if it would help him. It is a treatment that forces pure oxygen into the body, helping to heal areas of the body that have been oxygen deprived. Check out www.hugs4ndc.com for more information.

I have also asked if there is any chance of chiropractic care since it always makes Fergus more comfortable. His back is still not totally straight but it looks so much better. We are working on his back every time we sit him up or position him in bed. He loves to have us put deep pressure on his lower back. We are now able to touch most of his back without him crying and freaking out. He still doesn't like it but he is calmer about it. There is a possibility of a flexible back brace that would help to hold his back in a normal position. The doctors aren't sure that it would help as much as sitting him up and helping him relax.

He doesn't like to stretch out his fingers straight unless his wrist is bent down. He really gets upset if we work with his wrists, fingers, and arms. When he gets upset, his heart rate goes up and if he won't calm down, then we have to stop. The occupational therapist is making new splints for his hands. Fergus will not allow us to put him in splints that keep his arm, wrist, and fingers straight so the OT is trying to figure out what he will tolerate that will keep his hands as flexible as possible. She hopes to eventually stretch his hands out straight.

One thing that we have been able to do lately that calms him down is massage. When Fergus arrived at Ranken Jordan, he would not tolerate touch. Now, if he starts to get upset, sometimes rubbing down his legs and giving joint compression calms him down. Joint compression is when you push the joints gently together. He loves it. Massaging his arms is still difficult but we are working on it.

Fergus also doesn't like to be in the same position for too long (unless in a very deep sleep). He tends to arch his back, cry, and possibly sweat until we move him around. One of the latest things to help is soft, relaxing music. Maybe it helps to overcome the noise of the nursery.

For Fergus, please pray:
*for regular deep sleep
*no more storming
*for a straight back
*complete healing
*looser joints

For our family, please pray:
*for employment for Matt
*for a home for us to stay in while here (which will be at least one year)
*for us to see our kids soon

Again, thank you for your encouragement and prayers. We feel like we are on waves tossing us around. You are a lifeline for us.

esther

many storms

The main battle for Fergus, among many others, is to stop the storming. If the storming stops, then we can do so much more for him. The exhausting part of taking care of him is trying to calm him down. Sometimes we can figure out what he is upset about but often no matter what we do, he won't calm down. After a few hours of trying everything to help him out: constantly trying new positions, quieter surroundings, music, counter-pressure on his back, and massage (which he likes now), we are worn out. I don't like leaving him until he is falling sound asleep and very comfortable but it takes a long time to get him there.

Our older kids are not with us right now. We miss them terribly. We asked Deborah to take them to our home in Alton because they needed space to play and be at ease instead of being in a building like a hotel (where we are now). They are doing well and we talk to them often on the phone. Matt and I are trying (in between visits with Fergus) to find a home to rent here and a job, as close to Fergus as possible. As soon as we get a place, we'll get the kids back up here.

We are dependent on your prayers for all of this to settle soon.
with gratitude, esther

with love and compassion

We depend so heavily on your prayers... we can not thank you enough for remembering us.

The last couple of days, Psalm 103:1-5 have occupied my prayers for Fergus:

Praise the Lord, O my soul;

all my inmost being, praise his holy name.

Praise the Lord, O my soul,

and forget not all his benefits--

who forgives all your sins

and heals all your diseases,

who redeems your life from the pit

and crowns you with love and compassion,

who satisfies your desires with good things

so that your youth is renewed like the eagle's.

God has shown mercy and restored life to our son. I pray that he will crown Fergus with love and compassion, satisfying his desires with good things, and renewing his youth like the eagle's.

Today, I went to see him and he cried out as loud as he could (which is pretty loud now that the airway around the trach is growing) when he saw me. I picked him up and settled him down and he stopped crying. Definitely, his crying is purposeful and he now looks at anyone who talks to him.

Thanks, esther

Progress for Fergus is slow. The doctors have started him on a new medicine that he has responded to very well. In addition to relaxing his muscles and allowing more movement, his heart rate and fevers have stayed lower. They are planning on weaning him off of morphine over the next month (which he was getting every 4 hours in a moderate dosage) while slowly increasing this new medicine. The side effect of the new medication is possible damage to the liver, so they will be checking his blood every week to make sure he still okay before increasing the dosage.

These medications are important right now because he doesn't control his heart rate or muscles really well. He is given meds for heart rate, blood pressure, siezures, fevers, and pain. Please pray that he will be able to come off of these meds soon.

The last few days Fergus has seemed more aware of us. He looks at us longer and tends to cry if we don't put out some effort of calming him down. He loves to be held. Thank you for praying that we could hold and touch him.

I am putting together an afghan for Fergus. If you'd like to contribute a 6 inch crocheted square of any shade of blue or green, that would be great. Just send it to our home address: RR3 Box 3488A, Alton, MO 65606

gratefully, esther

Fergus had a rough day yesterday. He had a fever over the weekend and they thought it was all over but today it flared up again. He is on antibiotics and other meds that help with fevers but it keeps flaring up. I called this morning to see if he was doing all right and they said he was doing exceptionally well - very relaxed, cooled off, and comfortable. I'll head over there this afternoon.

It looks like Fergus will be needing help for a long time. Although there is much hope no one knows what he will or will not be able to do nor how long it will take. No one can say how long he might need to stay at Ranken Jordan but we are planning on sticking around the area for at least the next year. Matt will be looking for jobs in the area and a place to live. We all need the stability of a home and routines which we could establish better if we settled somewhere close by. We'll be forwarding our mail here soon so go ahead and send mail to us at home: RR3 Box 3488A, Alton, MO 65606.

Thankfully, Matt’s sister Deborah has offered her help to us. Having her here frees me to be able to spend several hours a day visiting Fergus. As much as the kids enjoy being with him, especially at Ranken Jordan where it is so much fun, they don’t want to stay there for hours.

The last couple of days, one of the songs that came to mind when I sang quietly to him was 'Leaning on the Everlasting Arms': "...safe and secure from all alarms..." He seems so scared and frightened most of the time.

Please pray:
-that Fergus’ fever and infection heal quickly
-that they can start reducing his medications
-for peace over his nerves and loose joints
-for a smooth transition as we relocate

with much gratitude for your constant prayers and support, esther

more therapy

Because of the good news of Fergus calming down, therapists will work with him more and more starting this next week. Also, they want to start decreasing his meds at the end of the week. This is really good news. The meds are really strong and it is not good if he stays on them for too long. Thank you for praying about his storming. God is merciful in hearing our prayers. Please continue to pray that Fergus calms down.

One of my concerns, especially over the last few days, has been his back. His hips don't always line up with his spine and the physical therapist is concerned that some rotation might have occurred with the arching. Please pray that his back and hips completely straighten out. Once those are in good shape, then the rest of him can heal. The physical therapist gave me some good advice on exercises to do with him to help his back. One suggestion was to lay him on his belly over my lap. He relaxed completely, allowing his back to curve properly.

Please pray:
for his back to straighten
for continued peace
for complete healing

Thank you, esther

quieter, calmer storms

I took my sling in the other day, just to see if Fergus might like it... he loved it. It felt so good to me to use the same sling that I've carried most of my children in, including Fergus, and have him melt into the fabric.

His back is still really tight and usually arches to the side a bit. He is relaxing more easily now, but even when relaxed his back is very tight. The nurses at Ranken Jordan have worked on trying to figure out what he likes and how to keep him from 'storming'. When he storms, he arches his back and takes a long time to calm down. They have figured out that he doesn't handle change very well. If we talk slow and softly to him while slowly moving his body, then he doesn't seem to get as upset. He also appreciates gentle, steady pressure instead of quick movements. He loves to see our faces and hear us talk calmly.

A few questions have been asked about us as a family. Ian, George, and Rose are all wishing to return to home - where they have their own space and everything is familiar. We are all tired of living out of suitcases. Please pray for us as a family: for unity, peace, direction, and stability. We need to be close to Fergus and continue life at the same time. We are trying to figure out what we need to do. Fergus will probably be needing the help at Ranken Jordan for a long time (yet no one knows how long).

We wanted to thank you for meeting our needs practically. The financial support you've graciously extended to us has given us a buffer while seeing life through tears and whirlwinds of emotions. Your prayers, love, and kindness have been pillars of strength to us over this time.

May God have mercy on our son and soothe his nerves, calm his fears, restore peace and grant abundant life.
esther and matt

progress

I am so encouraged by your comments! I am so blessed that so many of you love us so much. Thank you.

This past week has been so encouraging about Fergus' progress. I hold him as much as possible while there, for at least an hour at a time. I think he is starting to calm down a little when he hears my voice, especially when I sing 'Amazing Grace' to him quietly. He still looks at me with a blank stare but at least he does look at me for a little while when I talk to him. He is not comfortable enough yet for the therapists to do a lot of work with him. They are moving him, working with his legs, feet, arms, and fingers. One of the main concerns of the therapists is his back. He continues to arch and rarely keeps it straight.

At Ranken Jordan they use the term 'storming' to describe his episodes of anger, when his heartrate skyrockets and he sweats profusely. When he storms, he arches his back severley while extending his feet and hands (very stiffly). His storming happens frequently and they hope to get it under control. They told me that some kids have been known to break out of the storming cycle.

Because of the continous work with Fergus and his posture, I've already noticed a difference while holding him - even during storming, he arched less than before (he would arch so hard and stiff previously that it would take a lot of my strength to keep him from falling).

Yesterday was the first time that he slept in my arms for the past month. I cuddled him and he stayed comfortable for a long time. Then, he suddenly coughed really hard. A lot of mucous was coughed up out of his trach. It was very messy but extremely good news. The stronger he is to cough up his secretions, the sooner they will work on taking out the trach. He has been coughing this whole time, but not very hard, nor really enough. The doctor was excited to hear that he was that strong.

Currently, we are settling into Haven House here in St. Louis. The accomodations are very convenient - some meals provided, a kitchen to use, play areas, kids' books, and only 10 minutes away from Fergus. We can come and go very easily.

Please continue to pray for Fergus. He still is very uncomfortable and unsure about everything around him.

*Pray the storming cycles are broken*
*Pray that his back is straightened out, that the arching completely stops*
*Pray that he continues to heal completely in his trachea*

Thank you for loving us.
esther

St. Louis

Fergus is now at Ranken Jordan in St. Louis. We arrived yesterday afternoon and were greeted by a host of nurses, a doctor, and therapists. They checked him out and had me carry him (I was so happy to carry him) to a nursery shared with other babies. He will stay in there during this time. The room is almost completely opposite of where he has been - few mechanical noises, people milling around, laughing, playing, soft colors, stuffed animals everywhere, colorful blankets.

The constant stimulation of people has actually proven to be too much for him. They haven't been able to do much of anything for therapy because of his heartrate and blood pressure. When they are able to calm his heart, the therapy will begin. Already I noticed a difference this afternoon. They are adjusting his medications to take the edge off of his nerves so that he can begin to focus on learning.

One of the goals they will work towards is a removal of the trach and the g-tube (into his stomach).

I was given a tour yesterday of the whole building and was very impressed. I am so grateful that a place like this exists, let alone that Fergus can be there. With all of the loving care and attention that he receives there, I feel comfortable leaving him there for the night and waiting to be with him the next day. In many ways, the set up there works really well for me to spend time with our other children and then go and visit with Fergus. We are so relieved to be at place that is working on his recovery after a month of just trying to stabilize him.

Monday April 13th

Today Fergus was moved from St. Johns to Ranken Jordan in St Louis. This the first time I have seen him in three weeks and I was encouraged. I see that he has improved, but he has a long way to go. The swelling has gone down. He does open his eyes. He is moving. All of these things are good but there needs to be so much more.

Please pray for Matt and Esther. Through all of this I want them to know that we love and support them no matter what. Pray that they allow God to draw them closer to Him. Thanks again to all those that are praying for them.

James Lockerby

Today was back to the same old stuff - Fergus was extremely agitated all day and I was unable to talk or touch him without getting him too upset. Instead of doing all of those things I have been doing (holding him, feeding him, massaging him) I sat next to him all day and prayed.

The trach in his throat is doing well but they still need to keep suctioning liquids and mucous out of his lungs. The trach makes that much easier than it was but it doesn't keep his lungs clear of the liquids that he can't swallow. Please pray that his ability to swallow is completely restored so that his lungs stay clear.

I think he might be in pain or possibly just very uncomfortable. He tried to cry several times today (the trach makes the air exit his throat before getting to the vocal chords). They give him something for pain because we aren't sure what is going on. Please pray for quick healing and complete rest for Fergus.

Continue to pray for us as we feel tossed about with emotions, begging God for mercy for our child, and attempt to meet the needs of Ian, George, and Rose. May God bless you for your continued support to us.

thankfully, esther

The last couple of days have been busy. It is wonderful to have the kids back with us. Their time out in Maryland and Virginia was wonderful but we missed them.

Fergus has been doing really well. Prayers about him relaxing while being awake are being answered. Before today, any stimulation from anyone or anything strongly agitated him. Lights, noise, talking, or just being around him was too much for him. Today, I settled him into his bed, after changing the bedding and tucked him in. He was starting to fall asleep so I sat in a chair waiting for him to fall into a deep sleep. After I sat down, his heartrate soared and his breaths were fast. I jumped up to see what was wrong. As soon as he saw me and heard me speak to him, he relaxed. I grabbed a tall chair and laid a hand on his shoulder. He completely relaxed then and fell sound asleep. It was so nice to be able to be with him and not have him upset by my presence, but rather comforted instead.

The hospital is hopeful about moving us to Ranken Jordan by Monday morning. God has been gracious to us to provide a bed there.

Please continue to pray for the full restoration of our son. Thank you, esther

a breath of fresh air

Surgery went extremely well. He is breathing easily without extra oxygen and they were able to clear out his lungs of secretions. He struggled so hard to breathe in the last few days that I felt enormous relief seeing him calm after the surgery today.

I'm staying tonight at the Ronald McDonald House, which feels more like a home, instead of the hospital room. I accumulated a few things over the past 3 weeks and it was a little embarrassing walking out with 20 bags. (but funny to think about later)

with some relief and many thanks for prayers, esther

so maybe not St. Louis yet...

After the wonderful news today about going to St. Louis and after the wonderful night Fergus had last night, today didn't go so well. His breathing was more-than-usual labored and sounded to me that he might drown from liquid inside of him. I flipped out and called the nurse in. She boosted up the oxygen and got him comfortable enough to breathe, but he still sounded like a freight train. The doctor came in and ordered a chest x-ray and a breathing treatment that goes deep into the lungs. The x-ray showed that the lungs weren't doing very well.

Fergus is really not stable enough to go to rehab yet. I spoke with the doctor about a tracheostomy and it seems like the best thing to do. It would eliminate much of the problems that he has right now. Once that would be done, he would be stable enough to continue on to rehab. Tomorrow morning I'll talk to the surgeon who would perform the tracheostomy and see when we can get him in.

I was very disappointed to have a set-back for Fergus but if it is risky to send him to rehab like he is now, then I'm glad.

I wanted also to let all of you know that when I hear you say that your "heart was torn in two" or that you wept all night and that words don't express what you feel, I cry and sometimes weep to know that you have shared this with us. Thank you. Words cannot express our gratitude.

~esther

See Fergus in the PICU

If you want to see pictures of Fergus in the pediatric ICU click here.

St. Louis

I was just told that we will be transferred tomorrow morning to Ranken Jordan in St. Louis. Thank you so much for praying that we would get in soon!

~esther

a good night's rest

Last night was the first night that Fergus and I rested well. Yesterday, after several hours of hard breathing and fast heart rates, I stopped or slowed down as much stimulation as I could - no talking, no noise, dim light, and no touching. He was asleep within 5 minutes and continued to be calm the rest of the night, even when awake. Thank you for praying. **Please continue to pray that he calms down while awake.**

We just found out that we will be transferred to Ranken Jordan in St. Louis on Wednesday. I'll let you know more when I find out.

The medication for stiffness has really helped. We can move his limbs, fingers, and toes a lot better. Yesterday the physical therapist held him, sitting and crossed his legs which was great to see him do.


thank you, esther

out of PICU

This morning the doctor said that Fergus looked good enough to move out of the Pediatric Intensive Care Unit so this evening, I am writing in a comfortable room up on the pediatric floor with Fergus sleeping soundly next to me. I'm really enjoying staying with him all of the time. I'll probably sleep less overall but I'm a mom with her baby so I'm happier.

He is still very agitated when awake - his heart rate goes very fast and his breathing sounds like a machine: very loud, very consistent, and very fast. I am doing everything I'm told to do and whatever I can think to do but little seems to help.

Please pray:
- that he becomes more comfortable while awake
- that he is restored mentally and physically
- for a safe trip for our family in the next few days (our kids coming to us)
- that we can get Fergus into Ranken Jordan very soon

thanks, esther

relief

Last night the tests came back that Fergus is fine. The isolation was discontinued. They think his body is just simply recovering from surgery. Thanks for praying.

We get to see our kids soon!!! Matt is flying out east and traveling with Aunt Rachel and Grandad to bring them out here. We have missed them so much.

**Please pray that Fergus can get into Ranken Jordan in St. Louis as soon as possible.**

thank you for all that you do for us, esther

isolation

Today, Matt and I walked into the PICU and were surprised - Fergus is put into contact isolation. He possibly has a bacteria that easily spreads but is common with people who are on antibiotics for a long time. In order to go visit him, we put on new gowns and gloves each time. They should know later on today, after the lab work is done, why he has very loose, watery stools. They also started him on a new medication that helps to relax his muscles. After the first small dose I held him and he relaxed enough to even let his legs bend a bit.

St. John's Hospital here in Springfield has been excellent. The doctors and nurses are amazingly kind and skilled. Unfortunately, the hospital here does not offer rehabilitation services. The place they want to send him is Ranken Jordan in St. Louis. It has a good reputation for working with children with brain damage. Today we were told that if it will be a while longer for Fergus to get into Ranken Jordan, they will look elsewhere because he needs therapy as soon as possible.

We hope to have our children with us soon. Matt and I both feel the need to be together as a family again. Thanks to the Ronald McDonald House, we have a place to take them and be with them. We don't know all of the details for working this out but we'll let you know as soon as we can.

Please pray for:
- muscle relaxation
- full restoration
- full health
- his tongue to heal (he bit hard on it earlier, possibly during a seizure and I just saw it today - it looks almost forked)
- recognition of his mom and dad

Your prayers are a lifeline for us. thanks, esther

doing better

Matt and I have been feeding Fergus via the feeding tube and all has gone well. The doctors are planning to send Fergus to a children's rehab center in St. Louis, Missouri. They hope to have availability early next week. He no longer has any tubes or wires connected to his face and the medications are still being reduced slowly.

Please pray for:
- slower, calmer heart rates
- less agitation while awake
- looser, relaxed joints so his arms and legs can move
- quick healing for feeding tube so we can hold him
- restoration of ability to eat using his mouth
- adjustment for Matt and I in taking care of him
- ability to have us all together as a family as soon as possible (we miss our kids!)

thank you for loving us and our son by praying, ~esther

a new button

Fergus came out of surgery yesterday with a feeding tube put into his belly, with a button on top. They put him back on the ventilator for just a few hours but he was able to breathe on his own again, very soon. He seemed very uncomfortable throughout the night, with a couple of hours of sleeping (with the help of some morphine). Right now, he is upset.

Please pray for the following:
- he still has an infection in his throat
- his breathing is usually congested or a dry wheezing sound
- he seems very anxious about almost anything
- his heart rate was very high today and he had a bit of a fever
- his joints are still really stiff and tight

I'm on my way to see him now and I'll tell him about you and all that you are doing for him. Thank you! - esther

Esther's Update and New Prayer Requests

I just came out from being with Fergus...he's doing so much better and yet...

He is currently off of the ventilator tube and doing well. He grunts and coughs, but with much effort. I was able to hold him for the first time today and he seemed to relax a little bit more when against my shoulder. Currently, though, he is having problems with his joints being stiff. They won't bend very well. I tried working with his elbows just now and I could barely get them to bend. Everything that the physical therapists have done so far has worked well - his hands and feet are looking good but they haven't worked as much with his joints.

I know that we need to work with his joints and muscles a lot but I also know that more than anything we do, God must heal them. Please pray for his muscles and joints.

Our heads would not be kept above water without your prayers. Please ask the God of the universe, the source of life, to grant that life abundantly to our son.

He could also use prayer for resting. He is agitated and won't rest easily. He also has quite a bit of congestion in the lungs.

Thank you for praying for our son.

-esther

Critical Prayer Needs For Fergus And His Family

Fergus is in the fight of his life RIGHT NOW. His body has to be able to function again in so many ways that have been disrupted by the near drowning. It HAS to! So that he can recover.

Don't be discouraged by the long list of prayer needs. You need not tackle the whole thing yourself if you don't have the time or desire to. Just glance through list and as your heart is pulled toward a certain area of need, let that be the area you take to the Lord. Maybe do it once a day or once a week. Or every hour. There will be some who will pray through the whole list every day. There is no right or wrong way. The important thing is that we interceed to our Heavenly Father for these needs as the Holy Spirit leads. The list will be updated often with new needs, so check back often.

Some of the things we know they need prayer about is:

• for health and life be restored to 1 yr. old Fergus Lockerby
• for Fergus to swallow independently of medications. If Fergus can't swallow he will be given a tracheotomy
• for Fergus to have normal lung function allowing him to breathe on his own without a ventilator
• for Fergus' joints to become pliable and free of movement with no pain
• for peaceful rest inspite of his medications and congestion
• for his mama to be able to hold him more and more and for her touch and presence to bring him comfort and healing
• that the doctors will have wisdom, good common sense, rest and good health so they can work at their optimum, compassion for Fergus and the family, proper training and networking so as to give Fergus the best care possible
• for decisions that will be made about Fergus' continued care
• for every tech, nurse, specialist, staff member (and anyone who provides care for Fergus) to be alert, aware, wise, prudent, healthy and willing to do their job without cutting corners or putting Fergus in any jeopardy whatsoever
• for the needs of the family for stamina, rest, encouragement, and for them to be a witness to everyone who comes in contact with them of the Power of God in the face of affliction
• for George, Ian and Rose who wait in an Aunts' home that is not theirs; in a state a long way from home that is not theirs; thankfully they are surrounded by concerned and wonderful caretakers who love them, but evenso, who are not their parents; as is oft times common in children, pray that they will not have misunderstandings regarding all that is happening to their baby brother, that could lead to fears and unanswered questions; ask God to give them His peace and to help these children learn to trust their earthly parents and our Heavenly Father in bigger ways than ever before; that they will settle in to a necessary routine and thrive right where they are
• for Matt, Esthers' and other family members' need for travel, housing, food during Fergus' hospitalization and for all other physical, emotional and spiritual needs to be met. And that the Body of Christ will be motivated to show up where ever the Lockerby's go to say "You are not alone. We are here to prove it!"

Thank you and may God bless you as you spend time in prayer for baby Fergus' life.

~debbie reagan

no more ventilator

At about 9:00 this morning the doctors wanted to see if Fergus could breathe on his own without a tube and ventilator. He had been breathing well and it seemed like he was swallowing his saliva but the only way to know for sure was to pull out the tube and see how he did on his own. So at 9:45 they pulled it out and he is breathing on his own!!! Praise God. There is still much need for prayer about this. He has a significant chance for relapse in the next 24 hours. In 6 hours the medication that they have given him to keep his saliva in check will wear off and we will see if he can swallow it on his own. If he is able to do all this and things go well he will not need a trach tube put in and he will be moved out of the ICU. Thank you all so much for your prayers and concern we appreciate it greatly. Dad