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Most recent updates first
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7/19/07: Cayden recieved 40 million stem cells last
week!! YEAH!!!! That is 20 times the amount to got almost 2 yrs ago. 2 yrs ago she only recieved
2 million. We went to Progreso Mexico just south of Weslaco Texas. Progreso is a pretty nice border town with
alot of shops and very tourist friendly. Cayden recieved 2 IV infusions of stem cells 20 million cells each infusion.
Her first infusion was Monday July 9th and her second was 2 days later on July 11th. In about 3 weeks the cells should
have found thier way to where they need to go. Then at 6 weeks up to 6 months after the stem cell transplant we could
see improvements. I will keep you posted on her progress!!
7/4/07: We are getting ready to travel to Mexico
so Cayden can receive umbilical cord blood stem cells. Hopefully getting 40 million cells will help her to progress
even further and faster in therapy. Her last stem cell transplant was almost 2 yrs ago at that time she got 2 million
cells. This transplant she will receive 40 million cells YEAH!!
6/28/07: Now after 3 full weeks of therapy I am still
very happy with the therapists and the therapy Cayden is receiving. I have already noticed changes in her, she is more
willing to roll onto her sides and onto her stomach though she still can not get off her stomach once she rolls onto it.
Cayden is more vocal, though she is doing oral motor in speech therapy, not the actual language part of speech therapy.
ALSO Cayden is more willing to hold her head up and will hold it steady for longer periods of time. YEAH Cayden!!
6/14/07: Cayden had her 3 yr old check up today.
She is 38 inches tall and 34 pounds she is in the 75% on both height and weight!!! YEAH!!! That is awesome!! Just a year and
a half ago she was belwo the 3% on both hight and weight...she was way below the charts! Now she is above average on
height and weight! (Oh Brady is now 9 months old, he also had his well check today. He is 29 3/4 inches tall 90% on
height and 21 pounds 3.5 ounces 60% on weight)
6/13/07: Cayden began her new therapy today. She is
had 1 hour of OT and 1 hour of PT, then about 45 minutes of speech. She did a good job and did not fuss tooooo much.
So far I am very excited and impressed with the therapy at Active Development Therapies. All the therapist are kind
and caring and beyond that they all seem to know their stuff.
6/7/07: Today is Cayden's 3rd Birthday HAPPY BIRTHDAY
CAYDEN
6/1/07: Sorry it has been a while with no updates...Cayden
will be starting a new intensive therapy soon. She will get PT, OT and Speech 3 times a week each. So we will
be busy and gone much of the day 3 times a week. But it will be great for her. Her old therapy place just was
not cutting it. They had decreased her time in therapy to only 1 time a week of OT and 1 time a week of swim therapy
with NO PT or speech at all....their reasoning was that she was not progressing, what is that??
2/15/07: I took ALL the kiddos to the doctor this morning.
Brady has a double ear infection. Payton also has an ear infection. Cayden still has pneumonia. Cayden
got a shot of an antibiotic, hopefully it will kickstart her recovery from this pneumonia. Now Cayden is on her 3rd
oral antibiotic, we pray this one will do the job. Our kitchen cabinets and refrigerator looks like a pharmacy
from all the kiddos medications.
2/14/07: Now Payton and Brady have gotten in on the action.
They both have fevers now.
2/13/07: Well, last night Cayden began running a fever, which
she had not had until now. She is coughing more and vomiting up mucus, yuck.
2/12/07: Cayden had a follow up with her pediatrician. She
still has pneumonia. We took her for a chest xray today, which just confirmed the pneumonia. She is still doing
breathing treatments every 4 hours and she is now on a different antibiotic.
2/05/07: Cayden has been sick for a few weeks. She now has
pneumonia. She is on an antibiotic, breathing treatments, and an oral steroid. Hopefully she will get over this
soon. She has already missed therapies due to having a cold/sinus thing.
1/30/07: Cayden had a ophthalmologist appointment today. She
will have to go next week to Houston for an ERG(electroretinagram) so they can see if the Vigabatrin(the medication that controls
her seizures) is causing any permanent damage to her retinas. That is a common side effect of the seizure medication.
So it is a trade off of sorts. She has seizure control but in turn her eyes are permanently damage.
1/24/07: We went to the surgeons today to get Cayden a new button
(gastric feeding tube) placed in her stomach. She will have to go back soon, in the next few weeks for a new one she
has grown and the one she has now is getting to small and causing her some irritation.
1/15/07: Cayden is a little over 2 1/2 yrs old and finally
is saying DaDa. Don't know if she means Daddy or if she has just figured out a new sound. But for Shane's
sake we will officially announce her first word is Da Da!!! I am still waiting and working on Ma Ma but
nothing so far.
1/1/07: Hope everyone has a happy New Year. Cayden
enjoyed the bright fireworks. She can see the bright colors and lights flashing. Even though it was quite cold
we where able to stay outside and watch the lights for a little while.
12/24/06: Merry Christmas.
11/15/06: Cayden really loves swim therapy. She is able to hold her head
up while in the water. The slight resistance of the water helps strengthen her muscles. She kicks and smiles while
in the water.
10/10/06: Cayden is completey OFF the Topamax and she is no longer irritable
and fussing all the time YEAH!!!
9/19/06: Cayden is still very VERY irritable and aggitated on the
Topamax, so we have decided to wean her off it. The weaning process should take a few weeks. Hopefully once it
is out of her system she will be back to the happy little girl she was befor starting it.
9/12/06: Cayden officially became a big sister today. Brady
Anderson Towery was born this morning!! He is healthy and the entire family is HAPPY!!
8/28/06: I have a call in to Cayden's neurologist to see about trying
ACTH(the steroid therapy that is one of the first line drugs for the seizures Cayden has, along with Vigabatrin which she
is currently on the maximum dose of).
8/25/06: Cayden will be having an EEG next week. Once we find
out the results I will update on that. She is starting an additional medication, Topamax. Topamax is a very sedating
drug and can have some side effects. She is starting at a very low dose and we will slowly increase it over the next
3-4 weeks.
8/20/06: Cayden has been having alot more seizures lately.
She is up to the maximum dosage of the Vigabatrin. She has also had several different looking seizures, I am not sure
if they are a new seizure type or if it is still the same knid of seizures just presenting in a different way.
8/12/06: Cayden's benefit was today, we are deeply saddened by the
behind the scenes events which took place during the benefit Cayden had 40 brisket and several cases of chicken
and sausage stolen from her during the benefit.
Even though this horribly cruel thing happened to her, we want to make sure to thank everyone who took the time
out of their busy lives to take part in the benefit. A special THANKS!
to those who stepped in at the last minute to organize and help run the benefit.
6/23/06: On sunday the 25th Cayden will be going into the hospital
for the week to begin the ketogenic diet. We will be at Texas Children's Hospital from sunday until friday getting Cayden adjusted to the new diet
and at the same time I will be learning how much, how often and what to feed her to keep her in the right amount of ketosis. This
diet is a special diet that for many many years has been able to stop or greatly decrease seizures. Check out the links
section for more info on the keto diet, or use the clickable link above.
6/21/06: Cayden had her 2 yr checkup with her pediatrician today.
On the growth chart she is now in the 85% on her weight (up from way WAY below 2%) weighing in at 29lbs 12oz and she is 55%
on her height (up from WAY below the 2%) measuring 33 3/4 inches tall!!! Her head size is now 18 inches which is
in the 5% and that is also an increase on the charts from well below the 2%....so she is actually on the charts now!
5/26/06: Cayden has some BIG news
to report!! She will big a big sister!! In mid-September we are expecting a baby boy.
5/23/06: Cayden had another EEG today. It was a 1 hour
EEG and it did show some improvements. The brain wave pattern is still abnormal but the hypssarhythmia pattern
is gone. Hypssarhythmia is the pattern that causes contiued damage to the pathways of the brain. She is still
having seizures and I plan to ask for a longer more indepth EEG to further confirm that the hypssarhythmia is truely
gone. But for now this is good news, so no ACTH(the steroid shots that have nasty side effects). Cayden is to
stay on her current dose of Vigabatrin(750mg 2 times a day) and we will be admitted to the hospital for 4-5
days to start the Ketogenic Diet, which is a diet high in fat and very low in carbohydrates and protien.
4/29/06: We have increased Cayden's Vigabatrin dose a few times
in the past 3 1/2 weeks with no luck stopping the seizures. She is up to 500mg 2 times a day. Which is a good
dose and right around the average therapeutic dose for infantile spasms. Though she still has
several clusters of seizures each day. We are in the process of getting an appointment set up with the Texas Children's
Hospital Epilepsy Center. The Epilepsy Center has a team of specialists from pediatric neurosurgeons, neurologists,
neuromuscular specialists, physical therapists, occupational specialists, pathologists, psychologists and radiologists.
Hopefully we can get an appointment soon.
4/6/06: This week Cayden started physical therapy at
the Texas Children's outpatient clinic in The Woodlands. She will have PT 2 times a week. This is up from
the once a week she was getting through Early Childhood Intervention(a state agency for birth-3 yr olds). Though we
have to drive there twice weekly for appointments I think it is going to work out very well. They have a TON of PT equipment
and if for some reason the PT will be out we would still be able to keep the appointment but instead have a PTA(physical therapy
assistant). So we still get the twice weekly PT. Through ECI if the PT was out we missed that week of therapy.
She still does not like PT but actually when she gets mad and starts crying she actually starts working harder and does what
we are trying to get her to do. The new seizure medication, Vigabatrin, is still going okay. We are still seeing
seizures but she is not having any adverse side effects. So far so good!!! It could take a while for the levels of Vigabatrin
to build up in her body, and also she may need several increases in dosage. Once we get all that sorted out we hope
to have a seizure free little girl.
4/5/06: Cayden started her 2nd seizure medication yesterday
morning. The med is called Vigabatrin. It is a medication widely used in Europe, Australia, Canada. Though it has not been approved by the FDA for use in
the U.S. That means we must mail order it from Canada or the UK. That also means it is not covered by any insurance
so we have to pay for it out of pocket. So far she has not had any side effects from the Vigabatrin.
3/30/06: Cayden is no longer irritable. We have a call in
to the doc to give him an update on Cayden. We will be starting Vigabatrin pretty soon. It is a med that has to be ordered from Canada or the UK because it is not FDA approved. So it will
take a few weeks to get it. I know this will be a long process getting her to the correct dose of Vigabatrin but hopefully
this med will work well in stopping the Infantile Spasms. 3/27/06:
Cayden is very irritable and fussing and screaming all the time, which is a side effect of the new medication(Zonegran),
so we have taken her off of it. The medication should be out of her system in a few days. We will be
starting her on Vigabatrin.
3/24/06: Cayden is now taking a seizure medication called Zonegran.
She is starting with a dose of 50mg 2 times a day. On Monday or Tuesday we will call the neurologist to give him an
update and increase the dose as needed. So far I am still seeing the seizures, though she has only had 1 dose so far today.
Often times it take alot of increases in the dose to get to the right amount of medication to control any seizures and Infantile
Spasms are particularly hard to get under control. If this medication does not work we will switch to another and another
and so on. Regression is very common with IS and we have already seen her regress. She has gone from rolling over
to only rolling over a few times in the last several months. She is not batting at her toys as much as she used
to. Also many children with IS end up with feeding tubes because they lose the instinct to eat. That could explain
her issues with feeings which caused her to need a feeding tube.
3/22/06: Monday Cayden had a EEG, today we received the results.
She is having seizures. Her EEG showed hypsarrythmias which are irregular waves that indicate Infantile Spasms (IS). IS are devistating seizures which are hard to control and if they are not controlled they will continue to cause additional
damage to the brain. IS are also known as West Syndrome. Most children with Infantile Spasms develop other types of Epilepsy once they out grow IS. She is also diagnosed with Myoclonic Seizures. Both Infantile Spasms and Myoclonic Seizures are linked to Lennox-Gastaut Syndrome, which is another type of Epilepsy.
3/13/06: Well, so far she still hates her AFO's. We shall see
how things go this next week. She does not like them because they make her foot stay in the proper position. She
is not able to curl her toes and twist her ankles while wearing them.
3/10/06: Cayden now has her AFO's she does NOT like them so far.
We will build up the time she wears them each day and eventually she will wear them all day long.
2/7/06: Cayden is 20 months old today!!! She was casted
to make molds of her feet and legs for her AFO's. It should be around 3 weeks or so and she will have her magic legs.
She DID NOT like us holding her feet and ankles still and at a 90 degree angle...and she let us know about it.
2/2/06: Today we had am appointment with Cayden's Physical
Medicine (PM&R) doc. She has put in a order for Cayden to get AFO's(ankle foot orthotics) So she will have
braces on her feet/ankles to help stretch her tendons and muscles. It will also help support her ankles when she
begins standing. We also hope to get a stander soon so she will be able to weight bare. She needs the weight baring
to help keep her hips in proper alignment. We are now without a physical therapist, but hopefully we will be able to
get in with Texas Children's PT very soon.
1/16/06: We had an appt with Cayden's pediatrician today.
It was rescheduled from last week. Well she is feeling better though she is still stuffy congested and caughing.
Cayden has gained over 4 pounds since getting her g-tube placed. She was 17 1/2 lbs before surgery and is currently
21 lbs 10 1/2 oz
1/12/06: Cayden got her wheelchair today. It is a Zpippy TS, tilt
in space. It is shiny deep purple, and really cute. I will post pics soon.
1/10/06: Cayden had to make a trip to the emergancy room tonight. She
has had a cold for several days and now is having toruble breathing. Breathing 50-60 times per minute, normal for her
age is less than 30 times a minute. She has pneumonia and is now on antibiotics, steroids, and breathing treatments.
12/14/05: Today we had Cayden's post op visit. Everything looks
fine and we are scheduled to go back in on January 5th to have the tube removed and a button put in. Her feedings are
going fine we have increased her gravity feeds to 3 1/2 ounces every 3 hours during the day and pump feeds at night of a
little over 1/2 an ounce per hour, we are trying to increase that to 1 ounce per hour for 12 hours at night. I
am sure she will soon be putting on some weight. 12/10/05: We are home
from the hospital. Cayden went in for surgery a little after noon on Tuesday. The surgery took just
under 1 1/2 hours. She had the fundo and a g-tube placed. The tube will be changed to a button in 4 weeks.
We are glad to be home.
11/30/05: Cayden is having surgery to place a feeding tube(g-button) and
a fundoplication(surgery for reflux). Cayden does not take in very many calories or much fluid throughout the day.
She has lost weight and fallen off the growth chart. She is now officially failure to thrive. The g-button will
help her get the nutrition she is not able to get in orally. The surgery is scheduled for Tuesday December
6. We will be in the hosptial for 4-5 days.
11/29/05: Cayden's eyes look great. They can begin to move back out over
time but for now they look good and we are happy with the results.
11/18/05: Cayden had
her eye muscle surgery yesterday. We arrived at 5:45am, she went in for surgery about 7:40 am. The surgery took about
50 minutes Things went smoothly. They did both eyes...her left one drifts outward much more than the right but they tightened
both...the doc said her eyes may be turned inward for a few day(perfectly normal after surgery) The whites of her eyes in
the area they cut for the surgery is very red. Payton was so upset because she could not go into the recovery room...it
is an "infection control" rule...If you ask me, that is just code for unrulely kids control...they just do not want to have
kids in there running around and messing with the monitors(though Payton would NOT be one of the ones running around) She
jsut wanted to check on her baby sis and make sure her Cady Bug was okay. We left the hospital at around 10:30am. We went
by to pick up her perscription for the antibiotic eye drops and made it home around noon. Both Cayden and Payton slept the
entire way home. Cayden stayed asleep most of the day yesterday only waking for short times to drink a little apple juice,
then back to sleep. Today(one day after surgery) Cayden is wide awake and laying on the floor. She seems fine and the only
way you would know she had surgery yesterday is by looking at her eyes. We have a surgery followup appointment the tuesday
after Thanksgiving.
11/11/05: Cayden had an appointment with her GI doc today. We went
to him to discuss her feeding problems. She does not eat much and what she does eat it takes her a long time. We
will be going back to see him in 3 months and if she has not begun to gain weight or her weight has leveled off she will
get a feeding tube. If we have any further problems with feeding we will go back to see him sooner than planned.
As of right now she is still not eating enough calories and I have tried many things to increase her calorie intake.
I am not sure if what I am doing has made much of an impact on her weight.
11/10/05: 11 weeks ago Cayden had
her stem cell transplant. She is laughing a lot more and for no apparent reason...at least not apparent to us, just to her.
While on her tummy she is getting her knees under her more often. She has rolled over many more time from back to tummy and
2 times she has gone from back to tummy to back to tummy....she was heading towards the television...I guess she liked the
show. Speaking of shows she sat in her her purple chair for 20 minutes in front of the TV last week watching The Wiggles.
I had the lights off in the room so she could see it better. She would look at the TV then look away, which is very common
for kids with CVI, when there is too much visual stimulation they will divert their gaze (look away). She
did not use to react in any way to music but she likes it now, and all different kinds...nursery rhymes to rock 'n roll.
Cayden recognizes a few new words. After she eats I will wipe her face with a baby wipe and just before wiping her face
I say to her "I am going to wipe your face it is cold." She will start blinking and preparing for the cold. When we
are working on PT and Cayden has her head either slumped forward or flopped backward if I tell her to hold her head up
she will try to get her head upright. Also, if I tell her to play her music she will activate her 3D See 'n
Say. If I ask her to get her toy she will reach for it. Her coordination is still iffy, she does not always hit her mark.
But she is definently trying. Cayden is doing a lot more when left alone. When she is by herself she will explore
her toys. Of course she has trouble with coordinating and many times she is trying to grab a toy but instead she pushes it
away and out of her reach (So I go over and put it back next to her). She also rolls a lot when left alone.
11/2/05: Today Cayden had an appointment with her pediatrician.
She is 18 pounds now which puts her below the .2% in weight on the growth chart(yes that is point .2%) She is 29
1/2 inches long (which is the 10% on the growth chart). So she is pretty small to say the least. Also, she is
going down in the percentage, at 12 months she was in the below 3% now she is below .2%. If she was maintaining the
same % then it would not be as much a concern but she has gone down drastically in the growth curve. So we have an appointment
with a GI doc to see what we can do to help get more calories in her. We want to try all we can to keep her
from having to get a feeding tube. If we can not get her gaining weight then she will have to get a feeding
tube. We also discussed her getting a wheelchair. Having a wheelchair will help Cayden to be able to sit up staighter
and better. As it is right now anytime she is sitting up she is slouched over because she has poor head/neck and trunk
strength and control. 11/1/05: Cayden had another ophthalmologist
appointment today. She is set for surgery on her exotropia(outward turned eye) November 17th. The surgery
is outpatient so she will go home later that day. Her outward turned eye could be i mpeding her ability
to see. And when you add the exotropia on top of the CVI the combination definitely will
cause her more vision problems. She could need more than one surgery to completely align her eyes. She also may
need surgery in a few years as she grows and her vision changes.
10/20/05: Cayden has rolled over from her back to her tummy at least 3
times a day since Saturday (10/15). She is really getting the hang of it. Cayden is also working really hard in
PT, OT and vision therapy. Today during PT she sat with both hands on the floor in front of her for 40 seconds!! Cayden
is "talking" alot(okay making sounds and noises), she is saying "ha" or "hu" when we say Hi to her. She is also saying the
"d" sound alot more in the past few days. (Wahoooo the Astros are going to the World Series!!!) Cayden is really having alot
of fun chearing on the Astros. She will sit in my lap during the games while I am sitting indian style and we cheer "Let's
Go Astros" Then we clap on my legs 5 times and say, again, "Let's Go Astros" then clap 5 times again and so on....She just
cracks up laughing during this.
10/15/05: How exciting!! Today Cayden has rolled over 2 times from her back
to her tummy. Last week was the first time she rolled over from her back to her tummy and today (7 weeks post stem cell
transplant) she has rolled over 2 times. She is rolling over to her right while playing with her 3D See 'N Say with
her left hand. She usually favors her right hand. Her left hand has always been weaker but in the last few weeks
she has done much better with her left hand. RIght now she is back on her right side so I am sure she will be on her
tummy again soon. YEAH CAYDEN!! (and GO Astros!! They are in the playoffs NLCS against the Cardinals)
10/7/05: 6 weeks post stem cell transplant(SCT) of 1.8 million
cells. Cayden is 16 months old today. Cayden is generally more happy than 6 weeks ago playing and interacting with us
more than ever before. She is now using her arms and legs more. 6 weeks ago when laying on her back on the floor she would
lay there and move her arms a little and every now and then she would use her legs, now 6 weeks later she is kicking and swinging
her arms everywhere. She is also playing more, she will now kick and move when we say the words “play” or “fun”
she will even laugh and smile when “playing”. And she is vocalizing more, she will try to talk when you talk to
her…she opens her mouth with your words, though not much if anything comes out. These last few days I think she is trying
to say “Hi“ till now she has not said any words only a few sounds (aaa, gaa, and a few times she has made the
“m“, “b” and “d” sounds, a total of 8-10 times combined) in the last few days she has
started using the “h” sound. When we say Hi to her she will open her mouth and we say hi again she will open her
mouth and about 1 out of 5 times doing this the “hhhh” sound will come out though it is more a “Hhaaa”
than a “Hi”, but she is getting it. She is batting at toys and reaching for items more though not always coordinating
well enough to actually grab the toys she is reaching for them. She is now able to hold on to a toy once in her hand for a
few minutes at a time, 6 weeks ago she was only holding the toys for 5-10 seconds at a time then she would drop it. She will
purposefully hit her 3D See ‘N Say to activate the music and animal sounds. She is responding to more words… she
recognizes several words(20-30 words) 6 weeks ago the number of words she recognized was about ½ that at around 10-15 words.
Visually she has made improvements as well, she is orienting on visual stimuli within 3-5 seconds 6 weeks ago it was taking
15-30 seconds to respond. She is also now responding, by looking towards, a penlight with a colored film over it (red or yellow)
6 weeks ago she had no response to a penlight. And just today she was laying on the floor with her vibrating massage pillow
under her knees and her 3D see'n say toy on the floor to the right of her head she rolled from her back to her tummy to reach
her toy!!! YEAH this is the first time she has rolled all the way over from back to tummy!!! 8/29/05:
Cayden got her stem cells!!! It was a long couple of days but we made it through and Cayden now officially has 2,000,000(yes
that is 2 million) stem cells flowing through her body and hopefully making their way to her brain to repair even some of
the damage. We went to Matamoros Mexico (just south of Brownsville TX) for her stem cell transplant(SCT). It will
take aprox 2-4 months to see the full result of the SCT. I will update her progress periodically. If you would
like to read more about our experiance click here.
8/17/05: We finished another round of HBO (121 HBOT sessions to date,
40 of those @ South Coast Hyperbarics). This has been a long 2 months with very early mornings but it was well worth it. Cayden is more visually aware of her surroundings.
She can relocate items on her light box, once it is moved with only a few seconds of lag time. This is a great improvement
over just a few weeks ago. Her VI (teacher of the visually impaired) is very impressed and excited. We are also very excited
about the improvements. To go from a baby that only reacted, by squinting, to bright light to now looking toward various items
is AWESOME! For her to use her vision we have to be in a controlled environment with lights off and sitting in front of the
light box with no other visual distractions (lights, toys, people) in her line of sight. Now we are getting ready for her
stem cell transplant(SCT) in a week. We will be going down next Thursday the 25th to have chelation therapy and detox for
various heavy metal and then Friday the 26th she will get her SCT. We are very excited about the possibilities. 8/12/05:
3 days left for this round of HBO. Cayden is still doing great with riding in the carseat. Also, no fussing
or crying during HBO. Caydens vision teacher has noticed alot of improvement in just the last few weeks. Cayden
will turn towards her light box on the left and the right. She is taking less time to find the light box once it is
moved!! We have 2 weeks until she gets her stem cell transplant(SCT). I can not wait to see the results of SCT.
On average it takes 4-6 months to see improvements with SCT.
8/5/05: (113 HBOT to date, 32 @ South Coast Hyperbarics in Webster) Another good week for Cayden. She did not cry in her carseat or during HBO all week. YEAH!!!
We have 1 1/2 weeks of HBO left for this round.
7/30/05: This was a busy week. I contacted Dr Payne at the Steenblock
Research Instatute to discuss stem cell transplants (SCT). He put me in touch with a doctor here is Texas, Dr Frank
Moralas in Brownsville. We are very interested in going for SCT. There has been many positve results with SCT. If this can help Cayden recover even 10% of her brain cells that would be awesome! Click here to read SCT testimonials.
7/29/05: 2 and a half weeks of HBO left for this round. Cayden did great
today yet another day of no crying in the carseat and no crying in the chamber. Cayden is sitting in her Special Tomato
Soft Touch sitter(we got it monday the 25th) she really likes her chair so far. She sits in it to eat and also to play.
It sits her up very straight and tall which she seems to like alot. The chair seems to keep her positioned correctly
so she is not scrunched up. Her trunk, nech and head are perfectly inline, and the sides of the chair support her head
so it does not flop around, yet she can still move her head.
7/27/05: (106 total HBOT sessions, 25 in Webster) Cayden had a long day today. She did great during HBO, no crying or fussing in her
carseat or during HBOT. This afternoon she had vison therapy. The VI said she has seen a BIG difference in Cayden
just from last week to this week. Cayden did great, she looked toward her light box to the left to the right and
center. She reached for beads that where on her light box. She did awesome, and was happy and smiling.
Jay, the director at South Coast Hyperbarics, has mentioned for the last week or so that Cayden is much more aware of her
surroundings and notices movement....It is very exciting when others notice changes(it lets me know I am not crazy)
7/22/05: (103 total treatments of HBO, 22 in Webster) Another day with no fussing or crying in her carseat or during HBO. She actually slept during her treatment today.
I have noticed that Cayden will turn her head toward objects. She is not yet consistant with turning toward objects
but she is doing it alot more often now. 7/20/05: Cayden did great today.
She did not cry all the way down or in the chamber. She had a nuerology appointment today. We did not find
out anythign we did not already know. We did get a referal for a physical medicine physician consult, but the physical
medicine department is backed up until March/April '06 so we are on a waiting list.
7/13/05: Today Cayden fussed and cried in the carseat on the way
there and back, but no crying in the chamber! Yeah 2 days in a row!! I have noticed she is fixating on things
more. She will look towards objects, or people. I don't know how much of what she is looking at she is actually able
to process but she is definitely looking more. Cayden is acting interested in a little music toy the OT brought
out for her. She will listen to it while it plays and then she seems to make purposeful movements towards it to get it to
start again.
7/12/05: Now Cayden has had 96 total HBOT sessions. Today was a
great day. Cayden made it most of the way down in the carseat without crying. She was great during treatment,
with no crying at all, just made a little noise a few times and then settled right back down. And then on the way back
home in her carseat she did NOT cry!! WOW! What an exciting day!
6/30/05: 90 sessions of HBO to date.....We finished another week, this
was a short week with the July 4th holiday, we have no HBO Friday and will return for HBO on Tuesday the 5th. Cayden
is giving kisses now. When we say "kisses" to her she will open her mouth trying to give a kiss. Or if you make
kissie sounds she will open her mouth getting ready for a kiss. Very cute!! I have also noticed during this past
week she seems to be trying to grab for her rattle when we hold it in front of her and rattle it, though her coordination
is not there yet and her arm just kinda flys through the air past the rattle, but is sure seems like she is trying to grab
for it! She also seems to be using her vision a little more and trying to look at the rattle when we move it infront
of her face towards her hand.
6/28/05: What a suprise! A much welcome suprise...Cayden slept through
her HBO today. She was awake when we began. We put her hood on her and she just sat there and after a few minutes
she went to sleep. She was asleep the entire time. Another thing, she did not cry the entire car ride down or back....she
fussed for the last 20 minutes down and 30 minutes back...a BIG improvement over crying the whole way! I
hope this is the start of a good routine.
6/27/05: We had a long day today. We where gone for 12 hours! Cayden
had her HBO this morning and then an MRI in the afternoon. They gave her IV sedation and had to stick her 3 times
to get the IV started. Cayden was not a happy camper about that. Once they gave her the sedation she was out light
a light. She was sleepy all the rest of the day. I had to wake her so she would drink. They she would go
right back to sleep. Then around 8pm, over 13 hours after she last ate, she woke up enough to eat, she ate like a pig.
Then about 2 hours later she was eating again. It was a long day!
6/24/05: We are finished with our first week...only 7 more to go for this
round. We are both very tired and need this weekend break. Cayden is not yet into a routine and she has been going
to sleep very late at night, like midnight. So that only gets her about 6 hours of sleep and me about
4.5 - 5 hours of sleep per night. Hopefully next week she will get a routine started, I hope.
6/20/05: Cayden started another round of HBO at South Coast Hyperbarics in Webster (between Houston and Galveston) today. They have a multiplace chamber so we are in there with a few
other kids. Cayden sits up in my lap while wearing an oxygen hood, which is an adult side so it goes around her
waist instead of her neck....she looks like she is in a little bubble. Of course she does not like it because she is
not on mommy's shoulder, but hopefully she will get into a routine before to long. We are doing 1 treatment per day
so we are driving down every day, which is an adventure because Cayden still does not like her carseat. But it sure
is nice to be home every day and sleeping in our own beds at night. Plus it is alot easier on Payton with Mommy and
Cayden at home.
6/13/05: Cayden has a evaluation at South Coast Hyperbarics in Webster
(near Galveston) on Thursday the 16th. She should begin her next round of HBO on Monday the 20th. We will be driving
back and forth to Webster everyday for her treatments. 6/9/05:
Today Cayden had her 12 month check up. She weighs 16 lbs 13 oz, is 27 1/4 inches long and her head is 16 1/2 inches.
Those mesurments put her below 4% on the growth chart. Today we also received an official diagnosis of Cerebral Palsy,
which we already knew she had. There was just nothing officially in the charts.
6/7/05: Happy Birthday Cayden! Cayden woke up this morning
with both her eyes swollen and matted shut. Poor baby, all these alergies are doing a number on her. So
not the greatest birthday. We tried feeding her a little birthday cake and she did not much like it.
She has alot of sensory issues and putting new or different things in her mouth really bothers her. So of course
she was fussing about it and spitting it out.
5/28/05: Cayden is getting better at holding toys. We still have
to put them into her hand (she will not reach of them, yet) but once the toy is in her hand she will hold it for a minute
or so. She will also try to put the toy into her mouth though she still needs to get that coordination thing down.
She has some trouble getting and keeping the toy at her mouth. 1 1/2 weeks til Cayden's 1 st birthday!!!! 5/11/05:
Today she had OT(occupational therapy). When the OT put a toy in her right hand she was able to grasp the
toy and hold on to it. She then brought the toy to her mouth and held it there for about 5 seconds.
She would not hold onto the toy when it was in her left hand, she would only grasp then let go. With
less than a month to go til Cayden's 1st birthday, I am trying to plan her birthday party!
4/22/05: Another round of HBO down.
That makes a total of 81 HOBT sessions to date. Cayden has made some remarkable changes. She has much
better head control, more trunk control, putting her hands in her mouth more often(remember during her 2nd week
of HBO she did this for the first time), she is now babling(did not do this before), she has begun saying "g" sounds("gaa"),
using her arms some while on her tummy, seems to be trying to focus on objects, not sure but..seems like she is
trying to bat at one of her toys, less crying and fussing, sleeping through the night. Even though
her 2nd round of HBO is finshed we should continue to see improvements....I will update if I notice any other changes!
4/15/05: One more week to go for this round of treatments.
Cayden has been awake much more through her treatments.....not fussing, just hanging out with mommy.
4/10/05: Cayden has either gone
on a nursing strike or is trying to wean herself or something. She is not nursing, so we have been trying our best to
get her to take a bottle, or a sippy cup. We are watching her closely to make sure she does not seem to be having any
signs of dehydration. She does not like to take the bottle, she fights it, the sippy cup is no better....so I have to
resort to squrting the liquids in her mouth with the bottle. We will be going to a speech therapist later this
month to see what we can do to help encourage her to drink. She is eating 3 meals a day of baby food (aprox 12 ounces/day)
We are watching closely to make sure she does not begin to lose any weight. If she has trouble maintaining her weight
she will be put on a feeding tube.....we DO NOT want her to become "failure to thrive". We
will know more in the weeks after the current round of HBO.
4/9/05: Another week down. Cayden is not
crying or fussing as much during treatments. She seem to be more steady with her head control. Oh another
thing...she is cutting 4, yes FOUR, teeth. 4/2/05: Things
went well. She even sat in her swing for about 30 minutes with OUT fussing. Now I REALLY believe
she can see some. She seems to look at her hands a little, and even look at some bright colored toys. Though she
has not started reaching for the toys or tracking objects, maybe that will come soon! 3/28/05: Cayden
starts her 2nd round of 40 treatments. 2 treatments per day, 5 days per week, for the next 4 weeks.
3/18/05: Cayden had an evaluation to determine her development
level. Her overall development is that of a 3 1/2 month old, she is 9 months 11 days old. 3/16/05: Yesterday Cayden
had her appointment with the otologist. We discussed the results of her CT and the ABR, her ear is shaped
correctly but the amount of hearing loss she has in her right ear is so much that a hearing aid will not help her.
Thank God she has hearing in her left ear. With being blind her hearing will be even that much more important,
so she will have an ABR done every 6 months to make sure she has no hearing loss in her left ear. We will be returning
to Lufkin for her next round of hyperbaric therapy starting Monday March 28th.
3/7/05: Today Cayden is 9 months old. We went back down
to Texas Children's Hospital today for a CT of her ear. To be able to see the structure of her ear. We will
find out the results of that test next week at her Otology(ear doc) appointment. Today, while laying on the
floor she was almost able to competely rollover(from back to tummy). She was as close to rolling over as you can get, without
actually doing it! Maybe a few more days and she will figure it out.
3/4/05: Cayden had an ABR(hearing test) today, at Texas Children's
Hospital. She is profoundly deaf in her right ear, which we already knew. So nothing new to report
there, though the test did confirm that she still has all her hearing in her left ear.
3/1/05: Cayden will be taking a break from HBO for a few
weeks. She has appointments with specialists regarding her hearing(deaf in right ear) Cayden will have several
tests and appointments in the following weeks to find out if a hearing aid is an option for her. We hope to see
continued improvements during our HBO break. BTW she has cut another tooth(that makes 3) w/ another one on the way!
2/25/05: We finished Caydens 4th week. Cayden really
does smile much easier and with alot less effort on our part. She is awake an alert most of the day except during HBO,
which she usually falls asleep for. Cayden has been a little fussy the last 2 days, though most likely that is because
she is cutting her top 2 front teeth. Though she has been fussy, the fussiness is NOTHING like it was even just a few weeks
ago.
2/18/05: Cayden just finished her 3rd week. She did pretty
good. Though sometimes she just does not want to fall asleep for the treatment, sooo of course she stays awake crying(and
I mean screaming crying, sweat soaking crying). I have noticed that she is awake ALOT more of the day than she was prior
to starting HBO. She used to be more likely to take several 2-3 hour naps during the day, now the only naps she has
is while in the chamber(if she sleeps then instead of crying) so she gets 2 one hour naps a day. Also I have noticed
she is more alert, and alot more willing to lay on the bed or on the floor. Today she layed on the bed for well over
45 minutes with out fussing. She was content and just hanging out. I have not yet noticed her tracking objects,
hopefully that will come, we shall see! Another thing I have noticed is that she laughs more easily, before we had to really
work for a laugh and then we may (if we are lucky) get 1 little he but now she has been laughing much easier and
with less work on our part. Today she was craking up laughing while I was bouncing her on my knee. That was new
for us, she had me cracking up right along with her.
2/13/05: Today there was a newspaper article about Cayden in The
Courier, Conroe's newspaper. She is on the front page! This week Cayden and I will be going for treatments by
ourselves, we will see how it goes. Hopefully we can get right back into the smooth routine we got into last week.
2/12/05: Tonight was another exciting time, we noticed Cayden put her hands
together. Yet another thing she had never done until tonight. Before the treatments began she had not even noticed
her hands where attached to her and that she can control them. Another thing we have noticed is Cayden is very content and
layed back, which is a big change from the very moody, fussy, crying baby we are used to. I have been able to let her
sit in my lap facing forward and she has been happy with that, which is new for her.
2/11/05: Our 2nd week is over!!!! This was an exciting week!!!!
Cayden has established a routine, she is now ready for a late morning nap for her first treatment of the day @ 11am, and then
after that hour nap she stays awake until her afternoon treatment @ 4pm and then naps again for that treatment. After yesterdays
excitement of finally putting her hand in her mouth, I can not wait to see what next week holds for Cayden.
2/10/05: After Cayden's last treatment of the day today, my sister,
Summer, and I noticed Cayden putting her right hand in her mouth. While that may sound like a very basic baby skill
(one a 6 week old has long perfected), Cayden has never done this before!!! She found her mouth with her hand 5
times in a row. She just put her hand right to her mouth like a PRO.
2/6/05: This coming week my sister, Cayden's Aunt Summer,
is going with us, which I am sure will help out alot since Cayden does NOT like to be put down.
She wants to be held ALL the time, and that is hard to do when there is only one person to hold her(I
have to go to the bathroom sometime).
2/5/05: We finished our first week of HBO, Cayden did well, but
still does not like to lay down, I am trying to get her to be ready for a nap during her treatments, we shall see how that
works out. It is hard on the entire family for Cayden and I to be away from home all week. Payton(my 5 year
old daughter) is missing mommy and little sis.
1/31/05: Today we started Hyperbaric Oxygen Therapy(HBO or HBOT) at Lufkin Hyperbarics. The day started off a little rough, bad weather just topped it all off....Cayden does NOT like to
lay down and she has to lay down in the hyperbaric chamber, so that makes for a loooong treatment, she sure can scream LOUD!
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Send donations to:
Cayden Towery Medical Fund
4161 Weir Rd.
Cleveland, TX 77328
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