thursday evening

gen had a pressure mapping session this morning to determine the best cushion for her wheelchair. we had a meeting with the missouri wheelchair vendor. we decided what kind of powerchair gen will have and all the accesories. gen did a lot of work on her arms today; arm bike, e-stim, mobile arm supports. tomorrow we go to the zoo.

-joshua

wednesday night

wow! another big day for gen and all those who love her. this morning she moved her arms to the front back without help. her arm was resting in the mobile arm support, but there was no mechanical aid. she had a tube of lipgloss in her hand (supported by a hand brace) and she applied it without making any mistakes (like hitting her nose or chin instead of her lips). her therapist was thrilled. in speech she worked on making a sound that lasts a whole breath instead of short bursts of sound and breathing. she did well with that. in pt she worked more on her legs and was moving them front and back better than she had yet. all this movement is initiated by gen's muscles, not by electodes. in afternoon ot, courtney the therapist had a surprise for gen. she let her use one of those machines (i don't know the name of it) that lookes like a bicycle for the hands and arms. gen pushed and pulled the pedals without any help, and the therapists were so excited they all had her do it for them so they could see it. afternoon pt and speech were together, and they worked on breathing and vocalizing. she ate three good meals today (lunch was pureed hotdog/bun, pureed potatoes and pureed baked beans.) then tonight she got the feeding peg taken out. that is wonderful...the last tube is gone. we thank God for all the medical knowledge and talent that He has provided in the right place at the right time to help gen on her way to health. we know that He is in control and that He makes all things just the way they should be just when they should be. olivia, we did get the cd just before we left ku. thank you so much. we thank everyone else too for gifts and cards and comments on the blog. thank you also for the financial aid via the smb account, and a special account at first presbyterian church in joplin. there are a lot of wonderful people keeping tabs on gen and her progress, and we are grateful to all of you for your support and prayers for us.

susan

tuesday evening

ot put a left and right mobile arm support on gen's powerchair this morning. during ot, we worked both arms back and forth. gen wore a brace on her hand. the brace simulates gen squeezing her hand to hold something (like a spoon or chapstick). ot also brought gen a head switch. it can be used as a tv remote and a radio remote. we worked with the standing frame during the 1st pt session. gen held her trunk upright all on her own. she also had a pt session for her legs. she did well moving her legs from the thigh and from the knee. we have a big day tomorrow. gen will have her feeding tube taken out, have a pressure mapping session (to determine the best kind of cushion for her wheelchair), and have an assessment for her own wheelchair. thank you all for the cards and comments you leave on this blog. we enjoy hearing from you.

-joshua

monday evening

we started the new week with a speech session first thing this morning. katie brought in some juice that was the next step toward drinnking regular liquid...this one is called nectar and is thinner than the honey-thick drink gen has been drinking. she passed the test with the thinner liquid and the order has been placed for her to use it now. this is a big improvement, because it means gen's throat muscles are working more efficiently than before, not letting thin liquid run down her throat the wrong way before she has a chance to swallow. right after speech we had ot. gen worked with electrodes on both arms. she gets stronger each time she does this. in physical therapy gen worked on sitting balance in one session, and worked on moving her legs in the second session. afternoon speech therapy was devoted to working on breathing deeper using her abs to get her voice stronger. in the afternoon ot session, courtney brought in a new "toy": a mouth stick that gen can use to pick things up. she holds the stick in her mouth and pushes a lever with her tongue to make the device work. this is good exercise as well as a practical help. we thank God for continued improvement and for the peace that passes understanding.

susan

saturday evening

yesterday gen got to try a new computer set-up, again using her eyes to choose letters to type. it is a really new type of technology, giving the user more latitude and options. this was a prototype, not yet being manufactured, but there was some talk of having gen get one to use and to test for the people who will make it. that would be great for them and for her. we hope that will happen, because gen says it was the easiest set-up she has tried so far. she did more work today in her chair, and did the usual arm exercises and speech exercises. today she only had half the number of sessions and tomorrow she will not have therapy at all except the work josh and i do with her arms and legs and the speaking she does with us. she has had a couple of outings on the grounds in her chair. we will have to get clearance not only from the hospital but from insurance to take her off grounds (like a visit to the house we are using) so we will wait to try that. thanks again for all the comments here, for all the cards she gets, for all the many prayers that are prayed for her recovery, and for all the help everyone has given us. we thank you, and we thank and praise God for His goodness and for giving us friends like all of you.

susan

thursday evening

gen kept very busy today. eating meals takes longer than tube feeding. it is infinitely preferable gastronomically, but it does take time. each meal has 4-5 items, and gen eats two bites followed by a drink and a voice check to make sure nothing went down the wrong way. today mealtime and regular nursing and therapy were all vying for the same time slots in many cases, and we were playing catch-up most of the day. by the grace of God we made it through everything and now are ready for sleep. in ot gen worked on upper arm movement and brought her hand to her mouth with both hands, helped by the electrodes. in pt she did an obstacle course with the motorized wheelchair. she didn't knock down a single cone or cane. her therapist was impressed at her control. in speech therapy we had an evaluation done by two speech experts (doctors who teach and write textbooks). they had some practical suggestions for things to try to maximize gen's use of breath to facilitate speech. so in her second speech session, we met with pt and put gen on a mat in the gym. she was on her back and did exercises to help deep breathing, and it really made a difference in her voice...both the loudness and the length of sound. the idea was that when she is upright, she is working against gravity to get her breath to make sound. on her back she hasn't got the same resistance and she can get stronger at breathing and using her abs to get the voice stronger. we will be doing this for the next week or so, pt and speech working together for an extra half-hour a day. we have all her medications in pill form now, so she either gets them ground and mixed into food, or in the case of gel caps, she swallows them whole. we are pleased to get away from the tube to take meds. this is the next step to getting rid of the feeding tube. God gives gen (and all who love her) something new every day. we are thankful for the mercy and love of God to us, not allowing us to get discouraged. step by step He leads us and gives us what we need. we can do all things through Christ who strengthens us.

susan

wednesday evening

we worked on gen's legs today. during pt, we laid her on her side on a mat. we put a short table between her legs and activated her thigh muscles with a massage wand. she moved her right leg at the thigh and at the knee. later in the day, while the doctor was visiting, gen's legs were dangling from her wheelchair. the doctor asked her to kick her legs out. she kicked her right leg out one to two inches and her left leg out three to four inches. we are very excited about it. we are stopping all work with the sip and puff devices. gen seems to do better with the head movement devices than the s. 'n' p. devices.

-joshua

tuesday evening

gen had another big day today. we got the wheelchair adjusted so it goes faster than a snail's pace. we have two speeds but have been asked to use only the sane one. the other is way too fast. we care too much about passersby to use that one. the man who adjusted it also tested it, and as he flew by our room, we heard him yelling "whee!" that was a good reaction. in ot she worked with the mobile arm support, and fed herself a few bites of applesauce. speaking of food, she had three real meals (still pureed food and thickened liquids). because of that, she didn't have any tube feedings at all. they are talking about taking the feeding peg out because she can get her food and her medications by mouth now. we are in charge of getting her medications on time (they handed us a list of medicines and times and told us we were in charge now) (!) we also feed her the meals and help with cleaning and dressing. her trach site is healed over and they said there will not be a scar. tonight they took out her picc line, because they were not using it any more for lab draws. the feeding peg is the only foreign thing she still has, so we are excited about getting rid of it hopefully. in speech therapy she worked more on speaking, and breathing. ot also hooked up a sip and puff that controls not only the nurse call light but also the tv. when they get that adjusted right, gen will be much more in charge. thank you all for your care for gen; thank you for the prayers i know you all are praying for her. i believe the effectual fervent prayer of a righteous man availeth much. i know that God knows what is best and what we all can handle at each moment. i am so grateful that He doesn't give us more than we can bear. He cares that much about us. thank you all also for the cards. we had to put up another string to display the new ones from this week so far. gen loves to get mail and loves to hear the comments on the blog too. thank you all for going through this with us. we feel loved and honored.

susan

monday evening

we had quite the big day today. gen had her trach tube removed. the rt put a bandaid over the hole in her neck and told us that it would heal over in a day or two. she told us that it is easier to swallow and breathe. it has also been decided that gen can eat three pureed meals a day, starting tomorrow. gen now has a power wheelchair. it is controlled by her head. we started e-stim on gen's left arm today. she'll now be getting an extra half hour of occupational therapy each day. thank you for all the cards and letters.

-joshua

sunday evening

not much happened today. there is no scheduled therapy on sunday, so we worked with gen's arms and legs and worked on practicing speaking with her in her room. leighton and randi were here till early evening, and gen had fun visiting with them. we are always sorry to see them go, but seeing them is so wonderful that it is worth the sorrow of saying goodbye. gen got lunch again today: chicken, mashed potatoes, green beans, oj and chocolate pudding. she ate nearly all of it and hopefully will get to start having three meals a day this coming week. tomorrow starts another big week for gen and we pray that God will grant her success in her therapy sessions.

susan

saturday evening

not much to write about today. we had three sessions of therapy today. they all went well. we had a much needed visit from our families today.

-joshua

saturday am for friday pm

boy is my face red! i was here last night and completely forgot to write. sorry. gen had a good day yesterday. she stood in the standing frame in morning pt, with no help getting her feet straight. she blew bubbles and did other breathing exercises while standing. in ot the therapist was hooking up the electrodes and gen started moving her arm forward without stimulus. it surprised the therapist, but she let gen keep moving forward without help, and then did the electrodes only for moving the arm back. yay! in speech therapy we had a session in the electronics wing of the hospital, using a computer that she can work by looking at the letters or words. she spelled several things and was told that she had done better than most everyone on a first try. they will see about letting her use the computer in her room some next week if they can. otherwise she will use it in the office she used on friday. gen was supposed to get a lunch again, but there was a mixup between speech therapy who wrote for it and the fill-in doctor who didn't write the order. she ended up not getting lunch at all, but she was okay with that. she did more sitting stretches and workouts with the exercise ball in afternoon pt. all in all she did some new things and did better at some old things. a good day. we thank God for good days and thank Him for not giving us many bad days at all. sorry this is late.

susan

thursday evening

we started today with a standing frame session. it went very well. we mainly worked on breathing. gen and i got to blow bubbles. gen ate real food today. mashed potatoes and gravy, pureed pork, pureed veggies, thickened cranberry juice. it wasn't the tastiest food in the world (i tried it), but i think gen was happy to eat anything. she'll get to eat lunch for a few days, and sometime next week she'll graduate to three meals a day. she worked more with her biceps and triceps today. tomorrow, gen may get to try her sip and puff wheelchair.

-joshua


p.s. jenny, gen says: "knock, knock... housekeeping! you want mint for pillow?"

wednesday evening

it's been two weeks since we came to lincoln. gen has met a lot of new doctors, nurses, therapists and volunteers. getting to know the way things work here has been a challenge not only for her but for josh and me too. things that only a respiratory therapist could do at ku, anyone can do here. things that josh and i were authorized to do at ku can only be done by a nurse or therapist here. it seems weird that two hospitals can differ so much, but they do. gen has made progress daily just like she did at ku. today she ate chocolate pudding (more challenging than applesauce) and did so well that she gets a meal tomorrow. speech therapy will bring her whatever they are serving for lunch, but it will be pureed. gen worked with her arm again in ot, and then practiced moving it without electodes on her own. she practiced speaking all day today, and she is getting better at forming words and keeping her voice audible. we're about done for the day. thank you for your interest.

susan

tuesday evening

gen did some hardcore stretching during both of the pt sessions today. she had her right ribs stretched to help with her breathing. we also stretched her lower back by sitting her on the mat, putting her hands on this giant rubber ball, and rolling it away from her. during speech, i got to feed her applesauce and thickened cranberry juice. she wolfed it down. she has more trouble swallowing thin liquids than thick liquids (thin liquid tends to fall over the back of her tongue before she can swallow). she worked on bicep, tricep, and shoulder muscles during ot. we stimulated the muscles using a massage wand.

-joshua

just peachy the rest of the story

okay, i know i talk too much, but the computer decided i was through before i really was. gen said i should get on again and finish, so here i am again. i was saying i was tired from my long day and the drive up here, and i fell asleep somewhere around 4am. i woke up to the sound of gen saying "mom." what a treat, and i am not being sarcastic. today, josh and i (mostly josh) put up string in gen's room at her request so we could hang up all her cards. she has counted them too. her room looks so festive all the nurses comment on it when they come in. we want to thank everyone for remembering her with cards this way. it means so much. if anyone did not have the address, they can send cards in care of josh or susan at 5330 normal blvd, lincoln nebraska 68506. we also want to thank olivia for suggesting, and chris for initiating the account at smb for gen's benefit. her medical bills are unimaginable, and it is so comforting to know that people are willing to help us carry the burden by contributing. we are humbled and very grateful. we believe God is in control, and we praise Him for putting such supportive people in our lives as family and friends to make life a lot more enjoyable.

susan...this time i really was finished.

things are just peachy

today it was back to work for genevieve. she had physical and occupational therapy in the morning. she stood in the standing frame for the entire session (about a half hour.) while she was standing, we were working on her breathing and arm movement. we raised her arms at each inhale and lowered them on the exhales. she was working on getting more air into each breath and the arm movement allegedly helped lung capacity. occupational therapy came to her room a bit later and worked on arm movement with the electodes. gen moved her right arm front and back, the movements getting bigger as she warmed up. josh had the therapist hook him up to the electrodes too, so he could feel what it was like. he said it was fun but really weird. the first session of speech therapy was another swallow evaluation. gen did well with thick liquids and pureed foods. the thinner liquids and ice chips went down too fast and some of the substance made it into her airway before she could swallow. her reflexes are good, and she coughed it out before she choked. they concluded that she can have some soft foods, administered only by speech therapy for the time being. the second session of speech therapy consisted of gen's eating pureed peaches (her choice) and drinking oj. she was very happy to have real food, even if it was in tiny bites with time between for coughing and checking to see if she was still okay. she was fine. physical therapy came back in the afternoon and took off her cast. the possibility was that she would need another one if her foot was still too tight. but the verdict was that her foot was the right angle, so they fitted her for a splint like the one on her right foot that will be worn whenever she is lying in bed. this is easier than the prafo boots that were on and off every two hours. the splints also will keep her feet from pointing, which the prafo boots could not do completely. all in all, gen had a very forward-moving day. she has been vocalizing a lot this evening, since her second speech therapy session. katie encouraged her to keep the voice sounding as much as possible. gen is now saying the letters on the board instead of only blinking. this is terrific. i can't say how glad i am to hear her talk. saturday night when i was spending the night here, i was tired from my%2

sunday evening

thank goodness for monk and seinfeld. i don't know what we'd do without them. there was no therapy scheduled today, so we watched a monk marathon and three hours of seinfeld. we spent about half an hour outside in one of the many courtyards. we also did some excercises this afternoon and evening. gen is showing improved motion in both of her biceps.

-joshua

saturday evening

we only had three half-hour sessions today, since it is the weekend. occupational therapy was very good today. we worked mainly with the right arm. the therapist hadn't seen gen in a week, and she was very excited about gen's improvement in movement. gen is getting bicep and tricep movement, as well as some shoulder muscle movement. her right arm is still stronger than her left, but overall still weaker than normal. we had a pretty relaxing day. we watched a lot of tv. i wanted to nap, but gen wouldn't let me.

-joshua

friday evening

today was kind of weird. we had so many long breaks today, it felt like we didn't do anything at all. gen does all her therapy in half-hour sessions. today we had back-to-back sessions three different times. that left us with one and a half to two hours breaks between everything. a lot of free time. we worked a lot on breath support again today. she did well and is doing better every day.

-joshua

thursday evening

we finally got the "sip and puff" call light working. this allows gen to be left alone, if need be, and have the ability to call a nurse if she needs something. during pt today, we worked on sitting and breath control. gen accidentally swallowed some soapy water while trying to blow bubbles into a cup. a lot of the therapy lately has focused on breath control. gen got a cast for her left foot today. it will help with her range of motion. after a week or less with the cast her left foot should flex normally.

-joshua

wednesday evening

we started e-stim today. the occupational therapist attaches nodes to certain muscles. electronic shocks are then sent to her muscles, stimulating them. we will start on her right upper body, later moving lower and left...er. it looks like gen will be keeping the trach into next week. we had to uncap her today to get some secretions out. susan and i learned some more excercises today. they are trying to get us more involved in her normal everyday care.

-joshua

wednesday morning

wow! this is susan and i think i have forgotten how to use a computer. we finally got some sort of service here. it is different from ku. gen is getting adjusted to her new home. she has some nice therapists who are getting to know how she works. yesterday she got a new smaller trach that lets more air through. she has it capped full time now, and if she tolerates it another 24 hours without having to have suction she will have the trach taken out completely. she also worked on tongue movement (moving a piece of cranberry-juice-soaked gauze from beween her lips and teeth to the center of her tongue.) she is working on that again today as we speak. in physical therapy today she stood at the standing frame and kept her feet flat on the floor. she blew into a tube and moved some small balls with the air. this is new for her. occupational therapy is working on her arms and hands a lot. she has new splints for her hands that she will wear at night for awhile. they keep the tendons in her wrists from contracting. even a couple of days of contraction will shorten the tendons and make it even harder to use her . we want to avoid that. she is also getting fitted for a cast for her left foot (a serial cast that will stretch the tendons in her left foot so it is not contracted.) they will put it on for four days and then take it off. they think they will probably do another one for three days after that, and then they think the foot will be stretched to the right angle for full range of motion. they are going to do a splint for the right foot that will be put on at night for the same purpose. her left foot is much tighter than the right one. at first they thought she was much worse than they think now. she gets so on edge when they work with her in the gym that she tightens up a lot. they came to her room and found what we see, that she is very relaxed and can do much more then. the gym here is huge, and very overwhelming. they have started letting gen do her standing in a smaller room off the main gym where she can stay loose and concentrate on the work at hand. right now the speech therapist is having her blow bubbles in a cup of water and blow on a kleenex to see the air moving out of her mouth. she is having to work with the control on that, but she is coming along well. it takes time to get everything working together like she wants to. please keep praying that she makes the progress that God has for her to make. it is so easy to get discouraged when the work is hard. sometimes it is difficult to see God's grace and care for us when we get tangled in the worries and problems of daily life. we have to stop and remember what God has done for us and thank him for all the blessings. we give Him the praise and glory, and ask Him for guidance and strength to keep our eyes on Him.

susan.

wednesday morning

wow! this is susan and i think i have forgotten how to use a computer. we finally got some sort of service here. it is different from ku. gen is getting adjusted to her new home. she has some nice therapists who are getting to know how she works. yesterday she got a new smaller trach that lets more air through. she has it capped full time now, and if she tolerates it another 24 hours without having to have suction she will have the trach taken out completely. she also worked on tongue movement (moving a piece of cranberry-juice-soaked gauze from beween her lips and teeth to the center of her tongue.) she is working on that again today as we speak. in physical therapy today she stood at the standing frame and kept her feet flat on the floor. she blew into a tube and moved some small balls with the air. this is new for her. occupational therapy is working on her arms and hands a lot. she has new splints for her hands that she will wear at night for awhile. they keep the tendons in her wrists from contracting. even a couple of days of contraction will shorten the tendons and make it even harder to use her . we want to avoid that. she is also getting fitted for a cast for her left foot (a serial cast that will stretch the tendons in her left foot so it is not contracted.) they will put it on for four days and then take it off. they think they will probably do another one for three days after that, and then they think the foot will be stretched to the right angle for full range of motion. they are going to do a splint for the right foot that will be put on at night for the same purpose. her left foot is much tighter than the right one. at first they thought she was much worse than they think now. she gets so on edge when they work with her in the gym that she tightens up a lot. they came to her room and found what we see, that she is very relaxed and can do much more then. the gym here is huge, and very overwhelming. they have started letting gen do her standing in a smaller room off the main gym where she can stay loose and concentrate on the work at hand. right now the speech therapist is having her blow bubbles in a cup of water and blow on a kleenex to see the air moving out of her mouth. she is having to work with the control on that, but she is coming along well. it takes time to get everything working together like she wants to. please keep praying that she makes the progress that God has for her to make. it is so easy to get discouraged when the work is hard. sometimes it is difficult to see God's grace and care for us when we get tangled in the worries and problems of daily life. we have to stop and remember what God has done for us and thank him for all the blessings. we give Him the praise and glory, and ask Him for guidance and strength to keep our eyes on Him.

susan.

monday evening

we still don't have the internet thing worked out yet. here's a quick update...
saturday, gen started using the cap for her trach tube. she tolerated about 12 hours on saturday, sunday, and monday. the cap makes her breathe through her mouth and nose only. her tongue movement is improving. she can now stick her tongue out about even with her lips. she's been sitting in a wheelchair for the better part of every day. she has been wearing her own clothes every day. susan and i have been trained to do arm and hand excercises and to transfer her from bed to wheelchair and back. the therapists have been very nice, and they are starting to warm up to us. we had a visit from an "angel dog" this evening. gen thought the dog looked like our old dog, audrey. i'm sure i'm leaving important things out, but i'll write more tomorrow and try not to leave anything out.

-joshua

sorry for the wait.

here is the address at the house where susan and i are staying:

Genevieve Moore (or Joshua Moore or Susan Cordell)
5330 Normal Blvd.
Lincoln, Nebraska 68506

we are having problems getting internet access. we should be in the clear by monday evening.
we are on a regular schedule with all therapies (occupational, physical, speech). the therapists are all very nice, but we do miss the ku staff. its been hard getting used to the changes, but we are managing. i'll write more when i have more time.

gen wanted me to say "thank you" to "jenny and carey" and "hi!" to "crystal, nikki, emily, claude, shari, anne, and everyone else at ku."

-joshua

we are leaving for lincoln, nebraska tomorrow to start rehab.

we will post the address when we get it. thank you.
-joshua