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