its that time again, its late and im tired but cant sleep im sure of it:( we had an extremely busy day to the point im shocked that we made it! what started out as a simple pedi check up for zach prooved to be much more than that. i just needed referrals, a shot of RSV for him and a small look over, what i got was a unexpected chest xray (came back fine) almost running out of o2 causing me to borrow the clinics extra oxygen tanks until we left. we got the referrals for therapy, for an ortho doc, for a bath chair, we got zach a RSV shot. what we didnt get...a flu shot as they dont have them yet, and a direct answer as to "does he have cerebral palsy?" i was told it could very well be since he did have brain injury. still no definate answers. we left there 2 hours later and drove 40 minutes out of town to get more oxygen from our home health company and then we came back into town just as mikeywas about to get out of school....perfect timing. blah. exhustion set in as i quickly got zachs meds going and got his feeding set up before his therapist showed up for session at 340.
i recieved zach's speech pathology swallow study order today in the mail, it was writen up with what the results were , it stated that zach was able to swallow the substances once gottan to the back of his mouth, they also said that "the patient" seemed to be alert, calm and had sporadic head twitches or tics to the left looking like saying "no" that seem to be involuntary....this made me stop....he has been saying "no" to us many times a day for many days/weeks now. we thought it was cute:) now it looks like it could be something else....a seziure? a movement disorder? BLAH!
Zach is Zach no matter what we are inlove with him and are so very proud of him.
Mikey also did something today to make note of. even though he has been having trouble with his writing and sounding out words, mikey made a 80 on his spelling test today! he was first given it written and he failed...words like BACK were spelled like "vax" and when the teacher gave him the test orally he got 8 of the 10 words, the ones he missed were "your" and "they" so its proving to be a processing issue like we suspected, ill bring it up to his therapist on the 8th.
Harold is on leave for 10 days, we are very happy to have him home with us to spend some quality time and get some things done, but what upsets me is the fact that the leave comes because he is preparing to go to korea, i guess no matter how many times i say it im not prepared for it.
heres to a great weekend!!
the family
Friday, September 26, 2008
Thursday, September 25, 2008
Goody Goody Gumdrops!
wow ive had an accomplished kind of day, the kind where you look at all things differently, maybe not completely but really much more light hearted! a huge relief was taken from my shoulders today, i called Annie our MDCP(medically dependent child program) case manager to find out if we would be getting medicade back by oct. 7th, she informed me that we actually got it back 7 sept! so this means we have had the 19.5 hours from MDCP (they run over for up to a year) a week for the last 3 weeks that we havent used!! that plus what insurance pays and if we still need more from medicade we will be SET! this also opens the doors for other things, better equipment, more services, its just sucha relief! then i call the medical supply company and they tell me the new (teeny tiny) feeding pump for zach will be here next week!!!! EEEK its like christmas! lol im thrilled.
after MANY calls this week and an email to another doc, i called for the 3rd time today to our local clinic to get zach seen by a pedi doc, i originally wanted his pedi doc so we could meet him, sigh, but it didnt work and in the end i need to get him seen...i need to get zach a RSV shot, a flu shot, therapy referrals, a referral to the ortho doc for his scoliosis, to get a referral for a bath chair for zach and more....poor doc tomorrow thinks were coming in for blisters. lol he is gonna be shocked!
tomorrow is Friday! man i am sooo ready. Harold is also gonna be on leave for 10 days, thats 10 days to get things done around here and 10 days to spend with him. its kinda bitter sweet, i mean i love to get to spend time with him but i know its only cause he is preparing to leave. sigh. tomorrow is mikeys second week of spelling tests, the first we know he bombed, he was suppose to have a "practice" one on wed, but the class cheated on it and it got tossed out...yep first graders cheating...and to top it off who was the leader? yep you guessed it...mikey. when asked why he did it he said because he didnt know the words(the same words we go over every night!) he erased them from his page and didnt get caught from the teacher, but i had him tell her he cheated too and he was the ring leader....she was very accepting of his apology, so that was nice, but i felt he needed to take responsibility.
so heres to the weekend!!
after MANY calls this week and an email to another doc, i called for the 3rd time today to our local clinic to get zach seen by a pedi doc, i originally wanted his pedi doc so we could meet him, sigh, but it didnt work and in the end i need to get him seen...i need to get zach a RSV shot, a flu shot, therapy referrals, a referral to the ortho doc for his scoliosis, to get a referral for a bath chair for zach and more....poor doc tomorrow thinks were coming in for blisters. lol he is gonna be shocked!
tomorrow is Friday! man i am sooo ready. Harold is also gonna be on leave for 10 days, thats 10 days to get things done around here and 10 days to spend with him. its kinda bitter sweet, i mean i love to get to spend time with him but i know its only cause he is preparing to leave. sigh. tomorrow is mikeys second week of spelling tests, the first we know he bombed, he was suppose to have a "practice" one on wed, but the class cheated on it and it got tossed out...yep first graders cheating...and to top it off who was the leader? yep you guessed it...mikey. when asked why he did it he said because he didnt know the words(the same words we go over every night!) he erased them from his page and didnt get caught from the teacher, but i had him tell her he cheated too and he was the ring leader....she was very accepting of his apology, so that was nice, but i felt he needed to take responsibility.
so heres to the weekend!!
Sunday, September 21, 2008
life is hard sometimes
well i originally had this blog for us as a family to share whats going on, and here lately i know its been kinda an outlet to the struggles with Zach, and that wasnt the intended use, but i must admit it helps greatly, even if im just writing it and no one reads it, to get the worries and the fears and the stresses out. it helps. but i do intend on getting the blog back to us as a whole. some posts may be more on one person or one area from time to time, but i hope to eliminate basically copying from our carepage, so if you are looking to hear about zach mainly, please go to www.carepages.com join, sign in, and search for zach's page, his page name is zacharydavis no spaces.
i think i may have mentioned in here prior about Mikey, he was diagnosed at 18 months with SPD (sensory processing disorder) and underwent ocupational and speech therapy until 2 years old when we moved from germany to texas, i attempted to get therapy started up here but didnt know the right channels to go thru and kinda just thought he would grow out of it, yes i dropped the ball, i was younger and not nearly as wise, and i believe it hurt him:( and added stress to our lives. now fast forward to mikey at 3 years old, Harold is back in iraq and i am home with chance and mikey, mikey now refuses to take naps and wont sleep at night...i tried it all...finally broke down and took mikey to dr's they basically told me tuff crap we cant do anything, so i went to see a mental health doc, mikey was still to young to be diagnosed but i was told he probably had ADHD and to give him melitonin for his sleep issues....well he is now 6, still on melatonin, we have also tried clonidid and now remeron to help him sleep, and chance too as they dont sleep on their own much at all (chance started at the same age) mikey is now diagnosed with ADHD and we have him on ritalin 2x day. some days are better than others and some are pure hell. well last week we encountered another issue....mikey had his first spelling test words such as cat and hat and he spelled them all xaaa aaaa xoooxox well i think i wrote how i had zachs therapist look at him and now we think he may have a processing disorder maybe auditory processing disorder? i just feel like he cant catch a break! i dont want him labled as a bad kid or a stupid kid, cause he is certinaly not! tonight we did some "tacticle" learning, we used shaving cream on a plate and mikey wrote his words in the shaving cream, this seemed to help him remember what they were...so we can only hope things like this may help.
theres a new show on TLC (where john and kate plus 8 come on) called the curtians? autism x6...yes they have 6 kids with autism! wowzers. i am looking forward to watching the premier in the next week or so.
we had a nice weekend, on saturday we picked up our family photos and grilled some ribs out, on sunday harold took the boys to church and we had pizza for lunch. harold ended up having to go back to work for a lil bit as some of the guys are leaving early this coming week. he knocked a few things on his hunny do list and we got to relax some. this coming week im planning on making zach a pedi appointment and we have 5 therapy sessions, should be a nice busy week!
i think i may have mentioned in here prior about Mikey, he was diagnosed at 18 months with SPD (sensory processing disorder) and underwent ocupational and speech therapy until 2 years old when we moved from germany to texas, i attempted to get therapy started up here but didnt know the right channels to go thru and kinda just thought he would grow out of it, yes i dropped the ball, i was younger and not nearly as wise, and i believe it hurt him:( and added stress to our lives. now fast forward to mikey at 3 years old, Harold is back in iraq and i am home with chance and mikey, mikey now refuses to take naps and wont sleep at night...i tried it all...finally broke down and took mikey to dr's they basically told me tuff crap we cant do anything, so i went to see a mental health doc, mikey was still to young to be diagnosed but i was told he probably had ADHD and to give him melitonin for his sleep issues....well he is now 6, still on melatonin, we have also tried clonidid and now remeron to help him sleep, and chance too as they dont sleep on their own much at all (chance started at the same age) mikey is now diagnosed with ADHD and we have him on ritalin 2x day. some days are better than others and some are pure hell. well last week we encountered another issue....mikey had his first spelling test words such as cat and hat and he spelled them all xaaa aaaa xoooxox well i think i wrote how i had zachs therapist look at him and now we think he may have a processing disorder maybe auditory processing disorder? i just feel like he cant catch a break! i dont want him labled as a bad kid or a stupid kid, cause he is certinaly not! tonight we did some "tacticle" learning, we used shaving cream on a plate and mikey wrote his words in the shaving cream, this seemed to help him remember what they were...so we can only hope things like this may help.
theres a new show on TLC (where john and kate plus 8 come on) called the curtians? autism x6...yes they have 6 kids with autism! wowzers. i am looking forward to watching the premier in the next week or so.
we had a nice weekend, on saturday we picked up our family photos and grilled some ribs out, on sunday harold took the boys to church and we had pizza for lunch. harold ended up having to go back to work for a lil bit as some of the guys are leaving early this coming week. he knocked a few things on his hunny do list and we got to relax some. this coming week im planning on making zach a pedi appointment and we have 5 therapy sessions, should be a nice busy week!
Friday, September 19, 2008
oh bother its friday and im alone
wow, well i started this week out on a positive note, very happy go lucky and then as we wind down to today, friday i find myself in a funk. lets start with monday, Zach began to vocalize more on monday, by more i mean any, and of course by vocalize i dont mean mama or dada or baba i mean like ooooooo or a small squeal like noise, but its a noise other than crying for him. its progress.Zach had a swallow test on tuesday to see if he could infact protect his airway when swallowing, he did and we have been given the clear to get a speech therapist envolved and the GI doc said we can begin to introduce formula and solids to him, though let me tell ya with the oral adversion and probably the sensory processing dysfunction in his oral area this will be no easy task. still im up for it, i hope that zach can one day enjoy food. zach has been recieving ocupational therapy 3-4 times a week and developmental therapy 2 times a month. im trying to get physical therapy envolved and speech therapy, this could proove to be a very busy and trying time. in fact yesterday with his ocupational therapist i basically asked in a round about way how long i should expect therapy to last, dont get me wrong i know things wont change over night, and i know zach is way behind, but she told me stories of other kids and said some of them are 3 days a week for 3 years.....i think my heart sank there. just pure mental exhustion. ill be okay and we will deal but damn is all i can say. zach has been crossing his legs alot when we pick him up, his legs also bow out, some tale tale signs he needs physical therapy and probably some leg braces, this could be another indicator he will have CP (cerebral palsy)as if he didnt already have enough of these, infact ive had enough and am getting zach into the pediatrician next week (crossing fingers) to have him evaluated and to get some referrals and therapies started, i also need to get zach seen by an ortho doc for his scoliosis and have it monitored.
chance is doing well, he is roudy and as talkative as ever. he actually ran head first into mikey last night and ended up with a black eye:(. dad shaved their heads on monday and they are bald now. lol. ive been doing some "homework" with chance during the day, he seems to enjoy and he is so smart! he knows his colors, shapes, how to count to 20, some of his letters, number sequences. im just so proud of him!
Mikey has been in a mood, the medication doesnt seem to be helping at all and im about wiped out to figure out what to do for him. now he is also having trouble in school, his spelling test consisted of words like can and had and bad and hat and mat and he spelled them all basically xxaa or xoxo or aaaa??? WTH? we go over the words, he can tell me them orally one second and then not the next. he tries to memorize them and acts like he cant sound them out, doesnt understand the concept. his handwriting is in need of help! im planning on getting him some work books to help him as well. im worried about a learning disability like dyslexia or something i think its something more than ADHD. to top it off Harold is getting ready to go to korea and wont be able to come home for a year, he can take 2 weeks leave but we will have to purchase tickets for him to come home...1500ish bucks! even in case of an emergency where he is needed back ASAP we will still have to pay this amount! its insane to me. im so flippin mad! yesterday he found out he has to work another 24 hour shift tonight so its me and the kids today and tonight on our own.
im hoping to grill out tomorrow and cheer up this house! we got some ribs, onions and brauts to grill!! mmmm.
chance is doing well, he is roudy and as talkative as ever. he actually ran head first into mikey last night and ended up with a black eye:(. dad shaved their heads on monday and they are bald now. lol. ive been doing some "homework" with chance during the day, he seems to enjoy and he is so smart! he knows his colors, shapes, how to count to 20, some of his letters, number sequences. im just so proud of him!
Mikey has been in a mood, the medication doesnt seem to be helping at all and im about wiped out to figure out what to do for him. now he is also having trouble in school, his spelling test consisted of words like can and had and bad and hat and mat and he spelled them all basically xxaa or xoxo or aaaa??? WTH? we go over the words, he can tell me them orally one second and then not the next. he tries to memorize them and acts like he cant sound them out, doesnt understand the concept. his handwriting is in need of help! im planning on getting him some work books to help him as well. im worried about a learning disability like dyslexia or something i think its something more than ADHD. to top it off Harold is getting ready to go to korea and wont be able to come home for a year, he can take 2 weeks leave but we will have to purchase tickets for him to come home...1500ish bucks! even in case of an emergency where he is needed back ASAP we will still have to pay this amount! its insane to me. im so flippin mad! yesterday he found out he has to work another 24 hour shift tonight so its me and the kids today and tonight on our own.
im hoping to grill out tomorrow and cheer up this house! we got some ribs, onions and brauts to grill!! mmmm.
Tuesday, September 9, 2008
Tramatic Brain Injury
Yesterday was pure hell on me, but since im typing this so it means i made it hu? we had 3 appointments, plus the pharmacy and getting more o2 from the home health company yesterday, the little trip lasted from 930am to 330pm...when we got home i crashed!
i wasnt able to crash for to long though as Harold had a unit function to attend, so we gathered up the kids and went to a bbq. it was better than i thought, some wonderful ribs and burgers and Harold even had some deer Chilli...not for me though thanks:)
this morning we had 4 more appointments for the other boys:( for their behavior and that was over by 1030 luckily i came home to clean.no real changes for them, chance is being nearly 100% better, not sure if its mikey is gone or better sleep with the sleep medication, but its working. mikey is still showing out some, but no medication changes in him just some ajustments in time outs and such.
ended up needing to go to another pharmacy today and then the new ocupational therapist called and wanted to come by today, thursday and friday...eesh its been a busy week. Harold is on 24 hour duty tonight so he will be home tomorrow and sleep most of the day im sure. :(. im so drained and so tired! but when night comes i cant sleep....go figure?
Zach is still 21.6lbs still 27 inches(he hasnt grown in inches since we left in june) and 17 inches in his head size(small) the GI doc was happy with his weight and ordered a swallow study next week, this will help them to see if he is swallowing correctly or if he is aspirating into his lungs, this will let us know if we can possibly even attempt to feed solids or liquids to zach. next month when zach turns 1 year old they will move him from his current formula to pediasure. and other than the swallow study we dont have to return to GI until Dec. Zach also had a repeat echo done yesterday, results i wont know until friday when we return to the cardiologist.
Therapy went very well, it was more of a bonding time this time, she did however make him use neck muscles and back muscles and tummy time, we talked about his diagnosis' and a plan of action. she was told by the other therapist who evaluated zach last week that zach doesnt cry...and he really doesnt unless he is majorly pissed off or hurt. there seems to be some concern in this aspect, since he isnt babbling, or talking at all, she mentioned speech therapy may need to be brought in.we talked about zach being weaker on his left side of the body and preffering his right side. Zach also got some unexpected but much appreciated guests, Bro John and his wife Jannett came by to see us. we have been so bad lately for not getting to church, i know they came to remind us:) and to see zach of course. he loved the attention.
Things i suppose i never thought to ask the doctor until now while doing google searches....zach has billateral brain atrophy (his brain has shruken in the front) he had subdurmal hematoma, this is a result of a Tramatic Brain Injury TBI, he had a midline shift that has begun to correct itself after the last surgery on his head, all of this combined or even one single item could prove to be bad news later on, no one has commented really on what we can expect.
while at the appointment yesterday carrying around the diaper bag, oxygen tank, pulse ox machine and zach the nutrition lady (a sweetheart) mentioned the possibility of getting zach a specialized chair that could help hold his items,...this is definatly something to think about i suppose, we had hoped he wouldnt need that, but i think therapy is going to be a long road, not one zach cant do, just a long road. i still truely believe he has cerebral palsy, i think waiting till 6 more months pass could harm him:( ill have to try to get a second opinion to diagnose now. im trying to introduce to Harold the idea he could come home when zach is 2 and he still cant sit up on his own, this is hard to do though and hard to think about. Tramatic brain injury...all i can say is Why? i havent a clue. ugh, time to get ready for the night nurse....
heres to tomorrow....unless i forgot to write something down my calendar is EMPTY tomorrow:)
i wasnt able to crash for to long though as Harold had a unit function to attend, so we gathered up the kids and went to a bbq. it was better than i thought, some wonderful ribs and burgers and Harold even had some deer Chilli...not for me though thanks:)
this morning we had 4 more appointments for the other boys:( for their behavior and that was over by 1030 luckily i came home to clean.no real changes for them, chance is being nearly 100% better, not sure if its mikey is gone or better sleep with the sleep medication, but its working. mikey is still showing out some, but no medication changes in him just some ajustments in time outs and such.
ended up needing to go to another pharmacy today and then the new ocupational therapist called and wanted to come by today, thursday and friday...eesh its been a busy week. Harold is on 24 hour duty tonight so he will be home tomorrow and sleep most of the day im sure. :(. im so drained and so tired! but when night comes i cant sleep....go figure?
Zach is still 21.6lbs still 27 inches(he hasnt grown in inches since we left in june) and 17 inches in his head size(small) the GI doc was happy with his weight and ordered a swallow study next week, this will help them to see if he is swallowing correctly or if he is aspirating into his lungs, this will let us know if we can possibly even attempt to feed solids or liquids to zach. next month when zach turns 1 year old they will move him from his current formula to pediasure. and other than the swallow study we dont have to return to GI until Dec. Zach also had a repeat echo done yesterday, results i wont know until friday when we return to the cardiologist.
Therapy went very well, it was more of a bonding time this time, she did however make him use neck muscles and back muscles and tummy time, we talked about his diagnosis' and a plan of action. she was told by the other therapist who evaluated zach last week that zach doesnt cry...and he really doesnt unless he is majorly pissed off or hurt. there seems to be some concern in this aspect, since he isnt babbling, or talking at all, she mentioned speech therapy may need to be brought in.we talked about zach being weaker on his left side of the body and preffering his right side. Zach also got some unexpected but much appreciated guests, Bro John and his wife Jannett came by to see us. we have been so bad lately for not getting to church, i know they came to remind us:) and to see zach of course. he loved the attention.
Things i suppose i never thought to ask the doctor until now while doing google searches....zach has billateral brain atrophy (his brain has shruken in the front) he had subdurmal hematoma, this is a result of a Tramatic Brain Injury TBI, he had a midline shift that has begun to correct itself after the last surgery on his head, all of this combined or even one single item could prove to be bad news later on, no one has commented really on what we can expect.
while at the appointment yesterday carrying around the diaper bag, oxygen tank, pulse ox machine and zach the nutrition lady (a sweetheart) mentioned the possibility of getting zach a specialized chair that could help hold his items,...this is definatly something to think about i suppose, we had hoped he wouldnt need that, but i think therapy is going to be a long road, not one zach cant do, just a long road. i still truely believe he has cerebral palsy, i think waiting till 6 more months pass could harm him:( ill have to try to get a second opinion to diagnose now. im trying to introduce to Harold the idea he could come home when zach is 2 and he still cant sit up on his own, this is hard to do though and hard to think about. Tramatic brain injury...all i can say is Why? i havent a clue. ugh, time to get ready for the night nurse....
heres to tomorrow....unless i forgot to write something down my calendar is EMPTY tomorrow:)
Thursday, September 4, 2008
a weekend full of hope
yes i know im a wee bit early with the whole weekend thing, hu? well its simply because i dont know when ill have a chance to get back on. tomorrow is our big night, the one we have been hoping and waiting and praying on, tomorrow we will take zach to a nursing home, all his gear in tote, his medications, his machines, his oxygen, his formula, his boppy, his blankets, my blankets and pillows and whatever else and we will roll into the nursing home around 3pm. i will be staying with him of course, over night, we will leave out around 7 or so saturday morning. the sweet sweet beauty in this is once this is done....and the 30days have passed, zach will automatically...not according to income, qualify for medicade, this is a huge step for him as it will open more nursing hours, respite care hours, medical equipment, and more. im beyond excited to get this overwith, and to think, if i had listend to a certian someone at the hospital who said we wouldnt qualify, we wouldnt have this opprotunity, im so very greatful for the inspiration of others who have walked in our shoes for helping and guiding me to this decision. Thank you!
so as my last post said we dodged a huge hurdle today, with the negative results for infantile spasms, very greatful i am indeed. i had done soooo much research on it, so that if the answer had been yes we would have known the treatments, and the next steps, i talked with many wonderful moms who have gone thru this and its so heartbreaking, my thoughts will always be with them, thank you for your support thru the waiting.
on saturday we are having family photos made....WAHOO!! its been a really long time since we have done this, since before Harold went to Iraq in 2005, when Chance was just 8 days old, so its long overdue, and with him preparing to leave again, we need to get this done. the boys have MATCHING shirts....sooo cute, i cant wait to see how they turn out.
as i was typing this, we had to inturpt this and call 911 again for Zach, yes we though we were headed yet again to the ER and the PICU, our hearts stopped. Zach begant o cry a very strange cry and when we checked his pulse ox, he is on spot checks, as he has blisters on his toes from the probe:(. so i check the pulse ox and to our suprise zach is at 48! we trouble shoot again the line is fine, its connected, the machine is on, we begin to try and wake zach, his sats go up when we turn him to 2 litters, to 66 and then at 3 littes he hits the mid 70's, and then begins to go down. i called 911 again and as im on the phone with him he is shooting back to 97, it seems his humidifier kit has a pressure release valve and it was stuck! once we removed the stupid thing and connected to straight oxygen he is fine! ambulance came out anyway and checked on him, the same guy from last week....we will soon be on a first name basis with him. sigh. to much drama tonight, im tired. our nurse is here and im headed to bed.
so as my last post said we dodged a huge hurdle today, with the negative results for infantile spasms, very greatful i am indeed. i had done soooo much research on it, so that if the answer had been yes we would have known the treatments, and the next steps, i talked with many wonderful moms who have gone thru this and its so heartbreaking, my thoughts will always be with them, thank you for your support thru the waiting.
on saturday we are having family photos made....WAHOO!! its been a really long time since we have done this, since before Harold went to Iraq in 2005, when Chance was just 8 days old, so its long overdue, and with him preparing to leave again, we need to get this done. the boys have MATCHING shirts....sooo cute, i cant wait to see how they turn out.
as i was typing this, we had to inturpt this and call 911 again for Zach, yes we though we were headed yet again to the ER and the PICU, our hearts stopped. Zach begant o cry a very strange cry and when we checked his pulse ox, he is on spot checks, as he has blisters on his toes from the probe:(. so i check the pulse ox and to our suprise zach is at 48! we trouble shoot again the line is fine, its connected, the machine is on, we begin to try and wake zach, his sats go up when we turn him to 2 litters, to 66 and then at 3 littes he hits the mid 70's, and then begins to go down. i called 911 again and as im on the phone with him he is shooting back to 97, it seems his humidifier kit has a pressure release valve and it was stuck! once we removed the stupid thing and connected to straight oxygen he is fine! ambulance came out anyway and checked on him, the same guy from last week....we will soon be on a first name basis with him. sigh. to much drama tonight, im tired. our nurse is here and im headed to bed.
results are in
Neurologist just called, zachs 24 hour EEG last week showed no signs of infantile Spasms!YEA!!!! this is wonderful news! one diagnosis he was able to jump over! Thank God! so all the twitchin he does, is simply that...twitching! i feel like a heavy weight has been lifted! Thanks for your prayers and thoughts.
off to get mikey from school......:)
off to get mikey from school......:)
Tuesday, September 2, 2008
the last one for today, a bit of trueth and humor
Moms of SNC (Special Needs Children):
….some reflections and even a little humor….
You know you have a special needs kid when….
the pediatrician insists you call her by her first name.
your kid’s accordian medical file is 4” thick.
you feel you’re constantly in survival mode.
your medical deductible is met by mid-January.
you go for a highly specialized procedure (e.g., a colonoscopy, an EEG, an MRI), and the tech states “you look so familiar; have you been here before?”
you loathe the “developmental milestones” checklist at the pediatric “well baby” (HA!) visits.
“friends” don’t ask you to watch their kids because they fear you’ll ask them to return the favor.
your child is 18 mos. old and you long to have a book barbeque with your copies of “What to Expect: the Toddler Years” and “What to Expect: the Preschool Years”.
you feel yourself stifling laughter when others complain about their child’s “tragic” otitis media or (gasp!), their ordeal with immunizations or a blood draw.
you find yourself resenting any therapist's criticism of your little one's mannerisms ("fix your legs!" "don't rub your head!" "don't flap, just give a clap!").
your mail carrier must think your home is a pseudo-infirmary based on the bundles of Blue Cross/Blue Shield statements you receive.
your child is 2, and has a “medical resume” of sorts to facilitate succinct meetings with new medical professionals who are taking on your child’s case.
you deny your anger to a counselor, yet you long to create an iron-on tee-shirt that reads: “Screw you! He’s special needs!” (This could also apply to bumper stickers, key rings, personal pens; hey, maybe I’m on to a new merchandising trend!)…
you have a vast reference section under the category of your child's illness (also includes at least 5 three-ring binders with 8-pouch pockets sheets filled with medical business cards and contacts).
the quote “it’s nothing that a little prozac and polo mallet won’t cure” is especially poignant.
you see that doctors are human and insecure when they realize they can’t help your child; ("So that's why they call it "medical practice"; I get it!").
out of respect and empathy, you never turn your head to look at a handicapped person, and you are especially irked when you see people stare.
you understand “McDonald’s Envy” (i.e., kids at McDonald’s playground who do so easily what your child cannot) all too well.
you get excited to meet another parent “in your shoes”, as if another child with the same malady is something to celebrate (?)… (It’s so odd!)
your child’s name is permanently etched on your church’s prayer list, and you are on church prayer lists in at least 5 other states.
upon overanalysis of your childhood, you are convinced that you had the same problem as your child, but to a lesser degree.
Faux Pas:
being overly nice to my kid
ignoring my kid
treating my kid like there’s nothing wrong
Yes, that’s right, you can’t win!!! (Sorry, I’m just the crazy mom of a SNC; are you uncomfortable yet?).
a therapist says: "I just saw a child with something similar to what your son is doing; not nearly as severe, of course, but I have seen it before."
“We’ll keep our fingers crossed!”
not listening to the mom: (to one of my relatives) “No, I don’t think you should feed him that; he’s got major sensory aversions to foods like jello, pudding and oatmeal…. I’m serious…” “Ohhhh, I’ll just give him a little….” (gagging noises, then vomits)… They never listen.
advice. Lord, please no more advice. “Well, did you try _____________?” (fill in blank with any remedy under the sun. My favorites are when non-SN parents/non-medical people list off medications, or when they ask if it’s my laundry detergent or some other household item causing my son’s problems).
“Everyday when I think of you, I realize how fortunate I am to have healthy kids”
what we say: “Ohhhh, I so glad that my child could help you see the blessings that God has given you.”
what we want to say: “I’m so glad my misfortune makes you feel better about your life!”
The Sunny Side of having a SNC:
a SNC is a “bad friend” filter.
all sorts of medical professionals seem to immediately recognize you when you’re out and about (“all this and fame too!”).
you lose all old neuroses (I suppose you trade them for new ones, but let’s be positive); a clean house, for example, is out of the question.
you gain immediate respect from strangers/friends by your “in-depth” medical knowledge; (aka, a self-taught PhD in the category of Williams Syndrome, for example).
you get to take vacations to many big and exciting cities; “Pack your bags, hon! We’re going to Boston! (Children’s, that is…)”
it's December, and upon analysis of the full year's worth of medical statements, you smile and think, "Gee, for what we pay out in medical premiums and deductibles, I really got my money's worth!" (It's like an all-u-can-eat medical buffet, and you're a hungry, 500-lb. fat person. A more succinct way of stating this is "the all-u-can-eat medical buffet is losing money on me!").
you have a really good excuse for:
complaining
not showering today
being late
being forgetful
being a sloth
maniacal depression
not paying bills
not attending playgroups
not shaving
not attending the company Christmas Party, and all other outside company “fun”
being rude to telemarketers (or, in my case, bill collectors), parents, and spouse
not having sex
being hostile in traffic
in sum, total self-centeredness
you truly appreciate every developmental milestone that your child has mastered.
you realize that your child is somehow God’s instrument (although sometimes it feels like he’s God’s hammer!)
you cash in your innocence for wisdom (or is this a disadvantage?).
you begin to understand the essence of unconditional love, and strive to give it.
In this sometimes dark place, you are able to see more vividly Christ’s face and God’s fingerprints
….some reflections and even a little humor….
You know you have a special needs kid when….
the pediatrician insists you call her by her first name.
your kid’s accordian medical file is 4” thick.
you feel you’re constantly in survival mode.
your medical deductible is met by mid-January.
you go for a highly specialized procedure (e.g., a colonoscopy, an EEG, an MRI), and the tech states “you look so familiar; have you been here before?”
you loathe the “developmental milestones” checklist at the pediatric “well baby” (HA!) visits.
“friends” don’t ask you to watch their kids because they fear you’ll ask them to return the favor.
your child is 18 mos. old and you long to have a book barbeque with your copies of “What to Expect: the Toddler Years” and “What to Expect: the Preschool Years”.
you feel yourself stifling laughter when others complain about their child’s “tragic” otitis media or (gasp!), their ordeal with immunizations or a blood draw.
you find yourself resenting any therapist's criticism of your little one's mannerisms ("fix your legs!" "don't rub your head!" "don't flap, just give a clap!").
your mail carrier must think your home is a pseudo-infirmary based on the bundles of Blue Cross/Blue Shield statements you receive.
your child is 2, and has a “medical resume” of sorts to facilitate succinct meetings with new medical professionals who are taking on your child’s case.
you deny your anger to a counselor, yet you long to create an iron-on tee-shirt that reads: “Screw you! He’s special needs!” (This could also apply to bumper stickers, key rings, personal pens; hey, maybe I’m on to a new merchandising trend!)…
you have a vast reference section under the category of your child's illness (also includes at least 5 three-ring binders with 8-pouch pockets sheets filled with medical business cards and contacts).
the quote “it’s nothing that a little prozac and polo mallet won’t cure” is especially poignant.
you see that doctors are human and insecure when they realize they can’t help your child; ("So that's why they call it "medical practice"; I get it!").
out of respect and empathy, you never turn your head to look at a handicapped person, and you are especially irked when you see people stare.
you understand “McDonald’s Envy” (i.e., kids at McDonald’s playground who do so easily what your child cannot) all too well.
you get excited to meet another parent “in your shoes”, as if another child with the same malady is something to celebrate (?)… (It’s so odd!)
your child’s name is permanently etched on your church’s prayer list, and you are on church prayer lists in at least 5 other states.
upon overanalysis of your childhood, you are convinced that you had the same problem as your child, but to a lesser degree.
Faux Pas:
being overly nice to my kid
ignoring my kid
treating my kid like there’s nothing wrong
Yes, that’s right, you can’t win!!! (Sorry, I’m just the crazy mom of a SNC; are you uncomfortable yet?).
a therapist says: "I just saw a child with something similar to what your son is doing; not nearly as severe, of course, but I have seen it before."
“We’ll keep our fingers crossed!”
not listening to the mom: (to one of my relatives) “No, I don’t think you should feed him that; he’s got major sensory aversions to foods like jello, pudding and oatmeal…. I’m serious…” “Ohhhh, I’ll just give him a little….” (gagging noises, then vomits)… They never listen.
advice. Lord, please no more advice. “Well, did you try _____________?” (fill in blank with any remedy under the sun. My favorites are when non-SN parents/non-medical people list off medications, or when they ask if it’s my laundry detergent or some other household item causing my son’s problems).
“Everyday when I think of you, I realize how fortunate I am to have healthy kids”
what we say: “Ohhhh, I so glad that my child could help you see the blessings that God has given you.”
what we want to say: “I’m so glad my misfortune makes you feel better about your life!”
The Sunny Side of having a SNC:
a SNC is a “bad friend” filter.
all sorts of medical professionals seem to immediately recognize you when you’re out and about (“all this and fame too!”).
you lose all old neuroses (I suppose you trade them for new ones, but let’s be positive); a clean house, for example, is out of the question.
you gain immediate respect from strangers/friends by your “in-depth” medical knowledge; (aka, a self-taught PhD in the category of Williams Syndrome, for example).
you get to take vacations to many big and exciting cities; “Pack your bags, hon! We’re going to Boston! (Children’s, that is…)”
it's December, and upon analysis of the full year's worth of medical statements, you smile and think, "Gee, for what we pay out in medical premiums and deductibles, I really got my money's worth!" (It's like an all-u-can-eat medical buffet, and you're a hungry, 500-lb. fat person. A more succinct way of stating this is "the all-u-can-eat medical buffet is losing money on me!").
you have a really good excuse for:
complaining
not showering today
being late
being forgetful
being a sloth
maniacal depression
not paying bills
not attending playgroups
not shaving
not attending the company Christmas Party, and all other outside company “fun”
being rude to telemarketers (or, in my case, bill collectors), parents, and spouse
not having sex
being hostile in traffic
in sum, total self-centeredness
you truly appreciate every developmental milestone that your child has mastered.
you realize that your child is somehow God’s instrument (although sometimes it feels like he’s God’s hammer!)
you cash in your innocence for wisdom (or is this a disadvantage?).
you begin to understand the essence of unconditional love, and strive to give it.
In this sometimes dark place, you are able to see more vividly Christ’s face and God’s fingerprints
rambling on
well somedays it seems i have alot to say...or maybe i just think i do and its just meaningless chit chat? either way, the blog has become an outlet, one i wish id had sooner...but nonetheless im happy i have. ive been doing a TON of reading thru peoples blogs, i read my normal ones, and flip thru their friends blogs (im not the only one who does this) and i read about my beloved CDH babies blogs and more recently ive stumbled upon some wonderful readings from topics of special needs kids, infantile spasm kids, cerebral palsy kids, developmental delay kids, autistic kids and more, i read their struggles and fights and leave feeling a mix of emotions, anger that they have to endure this, pride that they overcome much and fear that zach may end up on the worse end. i have yet to find (maybe i havent read far enough into some of the blogs) a child like zach, now i know there will be differences of course, but i want to be able to flip to a blog and go...wow, its like our story...i guess what i want is someone who has traveled the road were on to guide me in the decisions and paths we need to take...to take the cheaters way out i suppose. of course this wont happen....with everything zach has...CDH, developmental delay, possibly cerebral palsy, possible infantile spasms (still waiting for results) chronic lung disease, restrictive airway disease, scoliosis, pulmonary hypertension, pulmonary hypoplasia, hypotonia, subderal hemotoma, gtube fed...etc. each condition varies with each kid...so combine them all and no way will someone travel our exact road...i pray.
sometimes my blogs will be to raise awareness or to share feelings, sometimes it will be for the readers, however few there are, tonights though is really just for me, to pinpoint where i was/am emotionally today. i was very "driven" earlier and read thru a huge number of blogs, a new past time for me, and i found something id like to post here, for anyone who would like to read them, and for me to just remember.
this is called the mother at the swings...
The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.
And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.
sometimes my blogs will be to raise awareness or to share feelings, sometimes it will be for the readers, however few there are, tonights though is really just for me, to pinpoint where i was/am emotionally today. i was very "driven" earlier and read thru a huge number of blogs, a new past time for me, and i found something id like to post here, for anyone who would like to read them, and for me to just remember.
this is called the mother at the swings...
The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.
And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.
productivity
its not everyday i can actually say i have been really productive, it seems life gets in the way of my plans and before i know it its night time. last night i laid in bed tossing and turning and thinking of everything i needed to get done today. i blame the insomnia on the mood pills...but considering my mood is awesome and my emotions are in check, i suppose its a small price to pay.
anyway this mornin i woke up at 545am, had mikey and chance up at 610 to eat cereal and get dressed, i had zach hooked up to all his portable equipment and us all in the van by 650am to take mikey to school. when we came back i cleaned out the van, did 3 loads of laundry cleaned both bathrooms and loaded the dishwasher, called and made zach a nursing home appointment for friday and left a msg for neurologist...not to shabby for 10am. there is still a lil id like to get done today, but i feel very happy of the things already done.
last night as i laid in bed tossing and thinking i thought of previous conversations with friends years ago and suddenly realized why zach is how zach is, many times i always said no matter how the baby was born (with down syndrom or another issue) id have the baby and raise it, termination was never an option, so it only makes sence God wanted to test my faith and beliefs, we are blessed to have Zach in our lives, he enhances it daily. chance has really become the over protective brother, its so sweet. mikey even sneaks in zach time and talks to him or kisses him. we may not be rich but we are blessed with wealth far beyond money and material things, we have love and understanding.at the end of the day thats what you count on and look for anyway.....
anyway this mornin i woke up at 545am, had mikey and chance up at 610 to eat cereal and get dressed, i had zach hooked up to all his portable equipment and us all in the van by 650am to take mikey to school. when we came back i cleaned out the van, did 3 loads of laundry cleaned both bathrooms and loaded the dishwasher, called and made zach a nursing home appointment for friday and left a msg for neurologist...not to shabby for 10am. there is still a lil id like to get done today, but i feel very happy of the things already done.
last night as i laid in bed tossing and thinking i thought of previous conversations with friends years ago and suddenly realized why zach is how zach is, many times i always said no matter how the baby was born (with down syndrom or another issue) id have the baby and raise it, termination was never an option, so it only makes sence God wanted to test my faith and beliefs, we are blessed to have Zach in our lives, he enhances it daily. chance has really become the over protective brother, its so sweet. mikey even sneaks in zach time and talks to him or kisses him. we may not be rich but we are blessed with wealth far beyond money and material things, we have love and understanding.at the end of the day thats what you count on and look for anyway.....
Monday, September 1, 2008
memorial labor day weekend
This was our first labor day with Zach as part of our family, even better he was here with us at home. some days things look so peachy, its perfection, and sometimes the skies are very dark. this weekend was very peachy! we did some painting around the house and got our bedroom nearly done! im excited as i didnt anticipate having it done before Harold leaves for Korea. time for that is ticking closer as well and i find im very anxious about it and very moody, in fact i forgot my pill the other day and just as my emotions got the best of me it hit me, i needed my pill. how is that possible sometimes i wonder, but truethfully at least for a while i need the help. we lounged around this weekend and i lost track of all the laundry i have left to do....tomorrow....blah. we had dinner with some friends tonight, it was nice to get away and talk normal talk. zach seemed to enjoy as well, he planted himself on the cumfy couch and didnt move, he looked around and watched the ceiling fan. this coming weekend we are having family pictures made....as long as zach agrees, im very anxious about these, and excited as well. the boys all have matching shirts and they are too cute and sooo true to their personalities. i cant wait. tomorrow is school day again and work for harold, time for me to clean and get things ready for the week. Happy Labor day
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