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
Wednesday, April 29, 2009
Saturday, April 25, 2009
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
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
Thursday, April 23, 2009
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
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
Saturday, April 18, 2009
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
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
Tuesday, April 14, 2009
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.
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.
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