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CyndRN
Age: 40
Country: US
Province/region: Michigan
City: Sterling heights
Partner: Josh
Children: Yes, 3
Pregnant: No
Occupation: RN
Online: 21 days ago.
Last updated: 21 days ago.
Member since: 1385 days
| Profile | Photos (22) | Children (3) | Blog (6) | Polls (0)
| Agenda (2) | Comments added (50) | Notepad
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My profile 18.5 weeks: 13mm bilateral

20 weeks: 11mm bilateral

24.5 weeks: 12.5mm bilateral

29 weeks: 14.6mm bilateral with 3rd enlarged, head 50%, 3.2 pounds

32 weeks: 15.2mm bilateral 3rd enlarged, head 85%, 4.8 - 4.9 pounds

35 weeks: 15mm right, too hard to see left and 3rd, head 75% 6.6 pounds, can see at least part of the corpus.

Born 8/27/08: Water broke at 36.6 weeks, c-section done, Born at 3pm at 6.5 pounds, 18.5 inch long and 13 1/2 inch head

24 hrs old 8/28/08: Ultrasound of head, bilateral and 3rd mild-moderate enlarged, will follow with MRI. All other Neuro exam is normal. Head circ 13.5inches

9/2/08: Peds visit: 6.8 pounds in 50th percentile

9/09/08 follow up ultrasound at 2 wks, bilateral increased, 3rd same. Neurosurgery consult 9/12 for shunting. Head circ 14inches

9/10: left eye infection.

9/12: neurosurgery. Ordered MRI and head measuring 35.8 cm. MRI ordered.

MRI on 9/16: Shows Aqueductal Stenosis, with moderate lateral and 3rd vent enlargement. Still following with Neurosurgery. Might shunt if it increases. Noted baby also has very mild hypospadius

Neurosurgery screw up 9-20: For a week we thought the surgeon saw my son's MRI films. He is on vacation and didn't get to see them yet! Worse yet, we can't get him an appointment until Novermber 6th!! This is CRAZY!!!

Peds visit: Baby at 8.1 pounds with diaper. Says he is falls in 30th percentile, for head and body.

9/26:Spoke with Neurosurgeon on phone. I told him head had increased to 37.5cm. He ordered Ultrasound on 10/1/08 and to see him on 10/6 in office. Baby difficult to feed (could be gas), I noted left eye wanders and right arm hypertonia.

10/6/08 Saw neurosurgery increase in fluid on ultrasound. Plan is to shunt him around Nov 28th unless there is an increase before that date then it will be sooner. Ultrasounds every 2-3 wks until surgery. Head is now 38.2cm.

10/12/08: very cranky tried every formula but soy. He woke up with rash to face and neck. Changed to soy, rash gone is 3 hrs, no more congestion and now is sleeping better.

Ultrasound: 10-15: No change. Neuro doesn't want anything more until 6 more wks. I made appointment with another neurosurgeon on 11-11.

Ultrasound 11/9: Increased fluid since 10/5. No follow up call from current neurosurgeon yet. Will see new surgeon on 11/11. head 40.2cm, 12 pounds, 22 inchs.

11/11: 2nd surgeon doesn't think it is that bad, wants to wait and see. I have a 3rd opinion this monday the 17th of november.

11/17: 3rd opinion at Childrens hospital. He states he doesn't have Aqueductal stenosis, and should not be shunted as of yet. Head size is 40.7cm, 13.5 pounds with clothes, and 22". We are following with this doctor. Current surgeon wants to shunt him next week!

11/22: Though we could remove wedge from bed, had not had reflux in weeks. This AM congested and nose filled with milk buggers! I guess I was wrong!

12/18: Head is 42cm, 23.5inches and 14.3 pounds. Next neuro vist 1/5, will have ultrasound, and I will ask for MRI. Most likely will need shunt. Head has jumped Ht/wt percentile. He is advanced and is sitting with minimal assistance.

12/18: PT evaluation from local MISC. Declined case at this time. He has lagging neck muscles, right shoulder hypertonic and doesn't roll side to side yet. Gave me exercises to do with him. Err Michigan is broke so not much help here.

12/22: Started reaching and grabbing with left hand.
01/12 Rolling from side to side.

2/1/09 He can roll all around. Stomach to back, back to stomach. Picks up toys on his own and plays with them in his hands. Can sit alone only with some balance. Stands alone with something to balance. Holds his own bottle. Neurology says he is normal so far.

2/19/09 Had MRI. Neurosurgery says he could be producing to much CSF fluid. Doesn't have Stenosis. So, far is stable and no shunt needed. Progressing normally./29/09 Sent MRI's to Dr.G at Duke. He noted cortical atrophy and thinning of the Corpus Collusem in the back of the brain. Advised NOT to shunt. Josh is creeping around, saying DaDa, and has learned to smack his lips so loud, you can hear him in another room!

4/16/09 Joshi is doing the Military Crawl. It is so funny. He also has developed stranger anxiety, and separation anxiety! This all started about the 10th. Working on sitting alone, he still forgets sometimes and falls over.

5/1/09 Well, I am very concerned because he is dragging his left leg when scooting, and has not started to crawl on his knees yet. He has not started to pull himself up, or step on his own. So, he will be evaluated by PT 5/18. She feels he might get behind now. His hand eye cordination is great, he can feed himself finger food, but sometimes it gets stuck inside his palms. He is so fat, anything could get lost on him...lol. He is 22 pounds, and less than 27 inches.

6/1/09 He has started to sit and crawl alone. Head is 46.5 cm, and he is about 22.7 pounds.

6/14/09 Josh learned to climb up a step, and I caught him pulling up on the TV to play with the Cable box. My oldest son taught him to sing Row your Boat...he just says: row,row,row! He also calls mama and dada.

6/20/09 He pulls up to stand, and started to walk around. He can recognize names of objects and his family too! Looks like he is not behind, and most likely will walk around 11-12 months, like his biggest brother Shane!

6/29/09: Cut his first bottom left tooth!

7/01/09: OMG he is running me ragged! Climbing, crawling, crusing, standing!!! Now he wants to feed himself, no baby food for him! He has a tooth!

7/29/09 Second tooth is here! I missed his Neurosurgery app. OMG! We think he tells us when he wants a bottle. He says" Dada, buba!"

8/10/09 He started to clap! I though he never would! He loves water and always wants to take a bath. Head is now 47.5 cm. It looks larger than other babies now. He started (dancing) last week. He shakes his head side to side when music starts.

9/21/09 Saw Dr Sood. head cir 47.5. Says Joshua is a normal baby. Will follow up in 6months. Nothing ordered. Joshua is starting to walk alone. Waves, bye, hi, and says I did it!. Also, says 2 word phrases.

10/10/09: He is walking on his own! All 29 inches of him. He also also started interacting with the TV and his books.

11/25/09: This past Feb the day of a failed MRI attempt Josh started having what looked like crying in his sleep episodes. They have been getting worse and more frequent. The last time he had one (they are always at 4-6am) during his sleep, I noticed it looked more like seizure activing involving his diaphram. I recorded it and will show it to neurosurgery. I removed his UV light air sanitizer from his room, and it has been 4 days without any such episodes. ??? I wonder if that machine was a trigger??

12/4/09: So I removed this items and this behavior changed from crying in the sleep to getting up at 330am and crying! He will not let me up him down, if I do..he wakes up and cries. It started around 11/29 and has been every night so far. His mood has changed from happy to cranky and I am now worried.

12/11/09: Head 49cm (with hair). Climbing up on everything and even up stairs.

12/14/09: Saw Sood. Head 49cm. Follow up MRI in Feb

12/16/09: Visit head 19in. 25.4lb, 30.5". Had shots and MA stuck him in a blood vessel! Changed doctors. Office staff has NO idea what they are doing. HEAD cir is very wrong, they don't use CM???

1/26/09: Had both H1N1 and he has been up for at night for a month solid. I see NO teeth?? He can how stack 6 blocks and he says many words and pharses such as Mama want that, whats that, who's that, ball, he is a little climber. Kisses and loves his stuffed animals. Has a otter he holds and carriers around.

2/4/10: Met new Peditrician. 31 1/4 ht, head 19 1/4, wt 25.7, chest 19. Was a total beast in office. Going for MRI on 2/24. Found out old Dr. has not recorded shots with Health department correctly now he needs EXTRA shots! New MD thought Josh was at 2-2.5 yr in mental age!

2/20/10: Was finally able to get ahold of him, head is 49.6cm. That was moving around. He can stack his blocks about 10 high.

2/26/10 Shots at Warren HDP.

3/7/10: I noticed about 10 days after his shots, a large red sore where he got his vaccinations, got cellultis from the health department vaccinations. On Omincef for 10 days. After 10 days looks healed.

3/14/10: He talks up a storm. He makes full sentences, and others can understand him. He asked a lady "what is that" and she almost fell over. He is so little (32 inches tall) and jabbers up a storm.

3/30/10: He is running and playing outside, however he has NO fear of dogs, and will laugh when they bark and growl at him. I have concerns about him not being able to scribble with a crayon yet. Also, he is trying to feed himself but turns the spoons upside down! He only has 6 teeth, we are wondering if he has any in there?

5/18/10: Well he started to cut ALL his teeth last month, and also to scribble on everything in sight! We had a contact diaper dermatitis issue related to his diapers in March and it is now clear after changing to Earth's Best diapers. He seems a bit weak in his right leg, and is going for a PT re-evaluation in the AM.

5/20/10: Saw PT, he was cranky and fell asleep on the way home at 1030am. He was WNL on everything but Locomotion (14 months) at 20 months. Then when we got home he did everything he wouldn't do at PT and even jumped off the ground twice! Well he started to have frequent foul BM's. (we just got in from Frankenmuth water park).

5/21/10: Had watery foul burning diarrhea, and would not eat or drink.

5/23/10: Thought it was over but then and he had 2 BM's this AM before 9am. Will be seeing Dr in AM. It always happens on a weekend!

5/24/10 Stool sent for Cultures. Still has diarrhea. Might be C.Diff or E.Coli from Frankenmuth.

5/26/10 : Saw Dr Berry, still with diarrhea.. cultures pending, + for blood. Most likely C.Diff.

5/31/10: diarrhea stopped cultures negative. Saw GI, the man didn't even know his case! 6/10/10! Told us to call if he gets worse.

6/7/10: Saw Dr Sood. Joshua was sleeping the entire visit. Head was 49.5 Cm. Told me he was clear.

6/12/10: Joshua falling all day. He also started to crawl over walking. Very worried.

8/3/10 Noticed large 3mm lymph node in right groin in am. Took to Dr Osks, he pulled back foreskin adheasons and large amount of smegma in area. Noticed Left Clavical fracture. Stated it was old 3-4 weeks. Sent for Xray. Xray was said no acute fracture. Now trying to deal with a new circ. AHHH. Noticed him limping following the Xray. Hope he didn't break something else.

9/1/10 2yr check up. Met Dr. Framovich, NOT impressed. Ht 33.75, Head 19 3/4 (50.2cm), chest 20", 28.8 with diaper. He was very bad..lol. He had Premvir 13 shot.

9/23/10 Saw Trock. Wants MRI and sleep study. Head larger since last vistit from 75 to 90th percentile.

10/16/10: Joshy as been ill with flu like symptoms for 2 weeks. Middle ear infection and congestion. Would not take oral meds so had to give him shots of Rocephin in legs. Right leg so swollen he can't bend it.

10/28/10: As othropedic surgery for clavical and Right leg Lump after shot. Very unimpressed. He could not view his Xray so he told me to email it to him. I had the tech hand deliver it to him and still without response. He stated Joshy might have a side twist to his neck causing his symptoms. Call in 2 months if leg not better.

11/5/10: Joshy started the foul smelling semi liquid stools. He them at night when lab is closed. Will take stool in for culture. He speach is amazing.. saying complete sentenses with pronouns and all!

1/20/11: stool negative, ortho never got joshy's films so we don't know what is wrong with his collarbone. For the last month he has been walking slamming his right foot very hard down on the ground. Might be othro issue.

12/24/10: Sick with cold for christmas thanks to brother Shane. Saw Dr. prescribed liquid Augmentin x 10 Days.

2/15/11: Not eating well for over a month now. Had hard green stools, then suddenly very soft ones most of the day. Might have eaten bad cream. Suddenly on 2/18/11 we I went to get him out of bed he looks ashen gray pale. Not really acting sick. Wondering if it could be heavy metal issues with Zhu Zhu pets. Will take to doc.

2/22/11: Saw Dr Oska, can't seem to find any issues. Blood work done: Iron High, TIBC high, Lymphcytes High, MCV high, BUN/CR ratio High at 50.

2/23/11: Second set of blood work for allergies done. Saw/ PT and she puts him at 24 months (29m age). Referred to Speach.

2/27/11: Low grade temp, then on 2/28/ up to 102.5 took him in to Oska and stated he had tonsilitis, didn't give any meds for it. Contines with high temp, and very pale 3/1/11. Will call doctor in AM. Took him in 3/5 gave Z pack. Had on off temp with night sweats for the following week. Seems better on 3/19. To see Oska on 3/22. Still not eating much.. 3/22 Saw Oska, ears and throat clear. Gave me copy of labs done on 2/22/11.3/21: Had hearing and Speech eval. Speach advanced. Can state 6-8 word sentences. Sometimes can not answer questions, could be stubborness. Started to eat more like normal. Can now climb up Hardee's playland without assist. Noticed eye blinking, will ask Neuro about this.4/5/11 In Philly for party and Joshy and Nate became ill with vomiting. Had to go to ER for Zofran.
5/11 Had xrays to see if he had any objects in nose. Starting picking and putting things up nose. Had red throat again. Has itchy eyes as well. Trying to rule out allergies. Will have MRI soon! Up to 31 pounds but still only about 35 inches. Have not measured his head, but need 4-5 yr old hats.5/14/11 Still awaiting Neurosurgery to call (3 weeks and counting), head 51.5cm, 30.8 wt., 35.5 inches.5/25/11 MRI with CSF flow study.5/27/11 Neuro called stated looks the same. Has follow up 7-11-11.7/11/11 Saw Sood. No changes on MRI, Ordered EEG for seizures.7/20/11 Looks much thinner and will not eat. 31.8 pounds, 35.9 inches.8/31/11 Started preschool today. 9/3/11 Speach assessment, 98 score. WNL 9/20/ Check up and flu shot. Burger king playland with Jackies kids...Josh fever an nasal congestion by friday. Called doctors office Monday, but Josh was sick and didn't want to take him in. 9/29-Saw Dr gave Omicef, diarra started in 12 hrs. Got changed to Zpack. Had to stop it.

1/23/12 34 pounds, head 52cm, ht. 37.5 inches










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Comments 1-25 to CyndRN
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triciah - Tuesday, 25 November
 oh my goodness what a wonderful picture!he has such a beautiful smile.


triciah - Tuesday, 25 November
 awes so adorable


triciah - Tuesday, 25 November
 what a face, he such a cutie!


dsryan - Tuesday, 25 November
 he is getting so big, wow!


turtlemom - Monday, 24 November
I've checked out your page to see how you were doing. Your case sounds different than the majority of the ones on the board. I hope they are able to find out whether or not there is a problem. God bless you and your little one!


triciah - Monday, 24 November
he is doing well. the last time we had an u/s the dr looked at the screen and said it looked as though it may have decreased a smidge but that the radioligist hadn't made any notes about it but that he definitely said it did not increase and it is not compressing. so he goes the first part of dec. for a month later u/s. but he is acting as a normal baby and very fussy in the eve. sometimes. i'm glad that josh is doing well on his new milk. hope he continues to do well.


triciah - Saturday, 22 November
oh my gosh, it seems like the drs are all over the board. wonder why the current one wants to shunt him and the other two do not. at least two are agreeing somewhat.did the 3rd dr say if the vents had increased or if his head is the size it should be? i hope he is doing ok, is he feeling ok since you changed formula?


turtlemom - Tuesday, 18 November
Thinking of you guys!


casey - Tuesday, 18 November
How did you appt go on the 17th?


triciah - Saturday, 15 November
it's so fustrating i bet for you to have to keep waiting. i hope josh is getting along ok and you as well. hopefully the 3rd opinion will give some insight as where to proceed from here.good luck!


jess2008 - Saturday, 15 November
How is Josh? I saw your post on my page....Gage is doing better today just alot of fluid in his little body and he slept alot today. The neurosurgeon did his shunt because his head started increasing more than it should have. The shunt is working great and he is healing quickly! Keep me posted on what is going on with Josh!


triciah - Friday, 14 November
how did the new neurosurgeon visit go? have you got any test results back?hope you and josh are doing fine.


turtlemom - Monday, 10 November
Good luck with your next appointment. I hope they are more organized!
I love the bathtime pics!!!


triciah - Sunday, 19 October
he seems to be getting good care.i'm so sorry that you are having to call and ask for help. hopefully you can find a neurologist that will make sure things are being looked at that need attention. maybe his muscle is tight and he will just need some therapy to loosen it up. i have a friend who's little 4 mo old has a neck muscle on his left side that is stiff and he is going through therapy right now. my reg ob told us about his personal experience at our second appt after finding out all of this. he is the one that spotted it on the u/s and sent us to a high risk ob, but anyway he told us that he went through the same thing we were going through...13 years ago, because his first son had dialated vents and he didn't know much about it and after his son was born he had a stroke and a brain bleed and was then diagnosed with cerebral palsy, i just thought it was very nice of him to share his personal experience, cause he explained to my husband that he went through the anger at drs too and with him being a dr didn't understand how they couldn't know what was wrong with their son, but he realized after doing his own research just like all of us,that everyone's outcome is different. i'm not sure if that is the norm for how hydro babies end up w/a stroke and bleed and are diagnosed w/cp or not but that was his experience, so maybe it will turn out to be just a tight muscle, i'll keep my fingers crossed for you and say a prayer.


triciah - Sunday, 19 October
it's sounds as though you need a second opinion since they seem unorganized and are not giving you follow up appts.hopefully the new dr will shed a different perspective on things and make sure everything is ok. all is well with our family,we go a week from this wed to have another u/s and see the neurologist to see if everything has remained stable. he seems to be doing very good right now, eating, sleeping, staying awake for periods of time,and his head only grew a cm, which they said is at a rate for a normal infant. children's hospital is sending a nurse out to our house twice a week for a couple of weeks on top of pediatrician, neurologist, and u/s appts. the first one comes this monday.


triciah - Friday, 17 October
i forgot to ask are they still doing the shunt surgery in nov. now that they have pushed back the u/s to dec?


triciah - Friday, 17 October
we don't go back for another ultrasound until 2 weeks now, they did another u/s and said everything is remaining stable (although i could see part of the screen and the measurement for one side was at 44mm and i couldn't see the other one my husband was closer and he didn't see what it said and i was feeding ryan so i could only look up a couple of times when the neurologist was explaining it and going over the results. but i think the other one said 20 something and previously after birth they were at 38mm each) they don't seem to like to tell you the size after birth, last time i asked this time i didn't cause they said it was stable and didn't give us any new info, and my husband said it doesn't seem to matter what size they are as long as they aren't compressing other parts of the brain. although for me if they aren't compressing anything then there must be areas of the brain that are missing for the fluid to be taking up space and not compressing anything. and the dr did say when i asked if it was partial or full agenesis, that it looks to be full agenesis, totally missing on the ct scan, but he said it also, is pretty much a wait and see situation if ryan is affected in any way.... he could have difficulty in learning, or have a high iq, or not have any effect at all from it missing, they just don't know until as he grows up and we see his progress.i'm still pumping breast milk, i'm trying to do it until i go back to work, however, i don't get much, so we supplement with similac advanced with iron, i'm too afraid he won't get enough if i just try to breast feed, and this way that we are doing i know exactly what he gets. he lost a little weight when we went back to his pediatrician today he had gotten up to 6 lb. 13 oz. and now he is back down to 6lb. 8 oz. we go next week for another appt to check his weight.


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Photos
Joshua (2008, 09, 04) Josh`s bathtime (2008, 10, 07) AHHH (2008, 10, 10)  (2008, 11, 18)  (2008, 11, 18) I`m fat and wet (2008, 11, 18) When I was born (2008, 11, 18) at birth (2008, 11, 18) I LOVE MY LITTLE CHAIR (2008, 12, 10) Chill`n like my daddy (2008, 12, 10)  (2008, 12, 27)  (2008, 12, 29) Like my jumper (2009, 02, 12)  (2009, 03, 11) 9.5 months (2009, 07, 01) My oldest and my youngest (2009, 11, 25) My big brother loves me (2009, 11, 25) Click here to see all cyndrn`s photos

Children
Shane-Nathaniel (1989) Howard-James-III (1992) Joshua-Alexander (2008)

Latest blogs
24-11-2008 - Siezure?
08-10-2008 - Cranky Baby
05-8-2008 - Blood pressure up
03-7-2008 - Upset
24-6-2008 - Anything elser!
13-6-2008 - Compliated pregnancy

Agenda
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