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