Another wonderful year…

Happy new year. Another year gone and another wonderful year ahead of us.

I wanted to share some update on Rocky.

Last year was an interesting year for Rocky. We started the year with left over stress of our Panama City trip. Rocky’s reflux was up. It was so much that he had to go for Acid Reflux study where in Doctor had to put a small battery powered device hooked to his stomach (inside Esophagus) reading acid level at different point in the day. There was an external device recording all the data wirelessly. The conclusion was high reflux. Rocky had a seizure in Jan. His reflux medication was increased. Then he went to India for month+ trip. He came back with less “weight”. Things were not getting back in shape. He stopped responding to teachers in school. It was stressful. But, towards the end of year…his reflux went down, so much, that he rarely throws up now a days. We know he has reflux even now and pretty high, but at least his throwing up is less…which means less intense. So, overall Rocky is “kind of” where he was before, this is as far as his health is concerned. Capability wise he is taking steps better. Drooling has worsened. His speech I think has worsened a bit (they are occasionally less clear). We are planning….to get him some better care. Some of the ideas we have are 

• Get him to Jacob’s Ladder
• Get some speech support from Marcus Institute
• Possibly get Anat Baniel Method

We have a evaluation planned at Jacob’s Ladder in few days. We are planning to move close to Jacob’s Ladder.

So, if you have any information about any of the ideas I provided above…please feel free to write us.

Also, I need information about special need classes in the schools around Jacob’s Ladder that way we can zero in on particular apartment complex to stay in.

What’s going on …

It’s been long that I posted any details about Rocky.
Since May’10, Rocky showed significant improvement in his ability to walk on gait trainer and ride the trike (primarily on how much he can move)…however last year, after we returned from our short vacation , Rocky had a strep throat and subsequently certain weakness as a result of which he lost weight and in Jan’11, he had two major seizures.
We made out some good plan to add some weight to Rocky…we have become calorie hunter

One of the seizure he had in Jan was major. We were scared and so was the doc, she prescribed Topamax as cocktail with Keppra. Well, it seems it affected him more than what we expected. Rocky was feeling so sleepy and loosy. He was not walking at all and stopped talking. We immediately asked doctor and got it stopped. Since yesterday, Rocky has started showing a little bit of glitter.

Rocky has been showing certain movement occasionally, that is scaring us. Refer one of my previous posting…there is a possibility Rocky might getting seizures of different kind through out the day…(or it could be cold or spasm caused by spasticity). We will be seeing the doc on 10th Feb, keeping our finger crossed.

He is yet to get back to his December state…hopefully he will be able to get back to that stage soon.

Rocky has been liking following songs…

• Haule Haule se hawa lagti hain
• All is well
• Kho na jaye yeh
• Somewhere over the rainbow
• I’m yours

Here are some of his pictures

Helicopter ride at Panama City Beach

A captured moment

With Santa

Rocky @ Fashion Show

Diwali'10

Experiencing catamaran

The unbeatable Rocky

It’s unbelievable how fast the time flies by. It’s been long that I have posted any update….and that was for a reason…every time I put a post I take a snapshot of Rocky’s status. I really wanted to take snapshot after all his major therapies are over so that we can compare the differences.
Let’s see what all things we have done in the past 2+ months

• Stemcell at Germany
• Intensive Physical Therapy
• Aqua Therapy
• Hyperbaric Oxygen Therapy (at home)

Additionally, Rocky had two rounds of sickness (Cold & cough) which forced us to break his Therapy schedule. We worked (especially Shivi) very hard for Rocky’s Individualized Education Plan in school and we intend to improve his education part this year …. as much as we can.

Improvements seen in Rocky : It is tough job to conclude as I can’t say “this is all that he has improved on”, rather I would say “these are immediate visible changes”. Rocky is showing something interesting every day…that makes us say “WOW”…

Here is the list in order of criticality and level of impact
1. Eating by mouth : Rocky can eat lot better than before. Occasionally, we are now letting him eat Pizza or chicken or Roti which he bites ….and amazingly enough …he is able to chew (occasionally with our help) and gulp it in.
2. Asking for particular food : Rocky now (when hungry ) says, “Can I have some Pizza ?” or “Can I have some palatha (Paratha) ?” or “Can I have some Dal and Sabzi (Lentils and cooked vegetables)” ? His asking for food is music to our ears.
3. Aspects of Walking : Rocky is now “kind of” lifting his leg to initiate step (when supported) for walking. He is still very stiff especially when excited and crosses his leg…but once he gets used to (takes approx 10 mins) …he keeps taking steps well enough. Some how he still doesn’t show a similar capability on Gait Trainer…but overall it is very positive
4. Spasticity : Rocky’s spasticity has gone down especially on his leg. Now when he is asked to sit on his Kid Kart with legs folded he stays in that position for a good duration. He is lot more flexible on left side of his body than his right side. He can bring his hand to mid line lot more confidently. He can bring down an inflated helium balloon at his own (and he loves balloon). I tried to teach him, how to let the balloon go up ….and he was able to do that few times at his own…however, he loves balloon close to him. Few days ago, we even observed that Rocky lifted his leg while we were changing his diaper and later we saw him lifting his leg while sitting on his kid kart(only when wearing shoes). Lifting leg has been big milestone for Rocky as per our view. However he is doing that only on Left leg….he is unable to to do that same stuff on right hand side of his body.
5. Head holding and trunk control : Not a lot of details…but he is doing better.
6. Communication and understanding our discussion : He now participates in small discussion (very small). He still keeps repeating certain thing until asked to stop…but the good part is when we tell him what he is doing wrong…he understands it and follows our gudance to resolve it. He takes time to assimilate what we said…sometimes…but he does it.
7. Study : Rocky’s last year has been slightly static as far education part is concerned….as we were more busy with Rocky’s therapy. But we were surprised by Rocky’s ability to pick up common phrases both in English and Hindi from what he heard while we were talking. I think he still has trouble responding to “particular” questions…but we have verified he understands lot more than what he says…now the key is…how do we make him to communicate what he has understood. We have few projects in hand at home…which is towards enabling Rocky’s capability of learning.

So, what’s next ?

• We intend to have future rounds of stemcell treatment. Let’s see how and when we do it. It depends on money we have or gather or raise.


• Education : This has become a key focus for us this year, and will be most important focus going forward.
  
• Therapies : We intend have regular therapies (Land PT, Aqua). We may re-start speech therapy too…however intensive therapies will be slightly less frequent…again depending on financial condition. Hyperbaric Oxygen we did over past almost 2 months has been good. But unfortunately we have to say good bye to that chamber. We hope to do it again in future. Thanks to Bill for letting us keep it for extended period.
  
• Social involvement : One of the thing that we have been trying to do is get Rocky into social. He is about to participate in Camp Hollywood organized by FOCUS and he will also be part of Under the stars by FOCUS. Recently we have been Six Flags day by FOCUS. He enjoyed it a lot ….he was not ready to get off any of the rides or activities that he went into…
  

Help needed : We need teaching ideas….that’s less like typical teaching but more like fun & play, so that it becomes easy for Rocky to learn. Even if you have a wild idea…please send it rockysparents@gmail.com

That’s all we have to share at this point of time…..

Hyperbaric

It’s been quite sometime that we posted any update. Rocky after recovering from Flu, started getting his Intensive Suit Therapy (Physical Therapy) 3 days a week, Aqua Therapy (twice every week) and now we just got started with Hyperbaric Oxygen Therapy (mHBOT).

Rocky’s Suite Therapy is 55 miles towards west while the Aqua Therapy is approx 30 miles north. So the therapies are keeping Shivi very busy. Especially , that Rocky is also attending his school although for less duration.

HBOT is one of the treatment that our doctor in Germany nodded “yes” to. During our visit to XCell , we reviewed Rocky MRI report with dr.Tamaschke, she showed us the part of the brain that was impacted by the lack of oxygen (the stem part of the brain), she mentioned that HBOT done after stemcell treatment will bring good results. We have done HBOT in the past , it was like 1hr twice every week. We didn’t see much of a result out of that…may be it contributed to his development but nothing that we can narrow down to. Based on our recent discussion (and little bit of research on internet), we have concluded that , to get the best result we need put Rocky in HBOT for lot of hours. We are thankful to both Allternative Gym , Hyperbaric Therapy Center and also Parkwood Farms Therapy Center offering a very low rate. However, even with this low rate it seemed tough for us to have this therapy done intensively (spanning multiple hours) everyday, so we have rented it from Hyperbaric Therapy Center. Thanks to Ms. Upasna and Ms.Mousumi for referring us to Hyperbaric Therapy Center. And Thanks to Mr.Bill and Ms.Emily for bringing it to us. Enjoy ther pictures… .

BTW: We have already seen some minor improvement on Rocky…hopefully it will be our next post.

Rocky with Bill and Emily

The Hyperbaric Chamber signed by Sylvester Stallone – Rocky Balboa

Shivi and Rocky having fun time inside the chamber

Rocky inside chamber

Rocky excited and waiting for dad to join him for play time.

Rocky playing with Playdough inside Chamber

Seizure Again…

Last night 4th Mar’10, Rocky had a mild seizure around 2 O’Clock in the morning. This seizure was very different from the seizures that we have seen, in the past as he started responding back very quickly, however you can still see he is not in control of his body especially his lips and smile.
We were worried about his seizure since the day he started having flu. Some how he overcame all of that, in fact he was doing much better for past two days, so much that, we started sending him for Physiotherapy (yesterday he had his first therapy session). He went to sleep pretty early than his normal time. So, this seizure was a kind of surprise (like all other).

Other than this, Rocky is doing better in overall health. He is very interactive and initiating discussions. We hope to start intensive physio therapy sometimes in next week, along with Aqua therpy and Hyperbaric Oxygen Therapy. Exactly 2 weeks ago, ROcky had his Stemcell done. Time passes so quickly.

We Are Back…

We returned on Monday (02/22) reached home at 5:00 PM. Flight was better, as there was no delay. We all had a little bit of cold during the last two days in Germany and Rocky was coughing a lot. He was slightly feverish.
The very next days we went to his pediatrician and she diagnosed that Rocky has “Flu”. But Rocky was immunized before we left for Germany….as per the doctor the flu was of different strain, than the one that frequently occurs in US and hence was not covered by “shots”.

We received the prescription of Tamiflu…and only after we gave a dose of Tamiflu that we came to know (from the Nuero Surgeon in Germany) that it is suggested that one should avoid Tamiflu (or anti viral) until 6 weeks from Stemcell treatment. So we stopped the dosage immediately. Unfortunately, nowhere there was any warning about or guidance with “Do’s and Dont’s” after stemcell.

We immediately started our research to understand the impact of what has already been done. The only reference that can get close to what we were looking for is
Emergence of oseltamivir-resistant influenza A/H3N2 virus with altered hemagglutination pattern in a hematopoietic stem cell transplant recipient. The bottom line, with continued treatment of Tamiflu kind of medicine (the one that works on “neuraminidase (NA)”), when the patient has undergone “hematopoietic stem cell transplantation (HSCT)”, there are chances that there will be a mutation that works against oseltamivir – the primary component in Tamiflu.

Now the fact is Rocky was given only one dose, the dose was a low grade “12mg” vs “75 mg” typical, so we are guessing that Rocky is not impacted. Moreover, we have not seen a “Red” warning from the Neuro Surgeon…so I guess we are ok.

Moreover, the use of Tamiflu doesn’t seem to impact Stem-cell effect negatively, it develops a resistance against Tamiflu…so we are hopeful, stemcell will show it’s result as expected.

I am comfortable with my discussion with doctor that Rocky is ok.

After two days of staying down…Rocky has started talking aloud again. We were depressed for last two days, but we are back up again. So continuing to keep our finger crossed.

Interaction with XCell – Day 3

So far the most important day is “Day-3″ Rocky is supposed to receive his stemcell. We reached hospital in hurry but on time. Went straight to the OT area at basement. Within few mins the anesthesiologist came over with a bunch of papers and mentioned smilingly that the stemcell sample has 6.7 million cells [to just get an idea...the worst is 1.5 millions], so it’s a kind of good news. A slightly not so good news was that vitality of the stemcells is 79.3 %, the expected vitality is 80%, and in certain cases people have 92% vitality , worst that the anesthesiologist is aware of, was 52%. So, we were kind of ok. Vitality is the strength of the stemcell indicating how active are they and hence, be able to survive.

Rocky had is IV stuck in his hand from the Day-2 marrow collection process, so I just went inside the OT and they quickly gave him the anesthesia and Rocky was in sleep quickly. After so many trips to OT, Rocky is now scared of any people who wears apron…so before anesthesia…he was crying profoundly.

Within 15 mins doctor was out and mentioned that the procedure has been done and Rocky should be back in few mins.

In 30 mins Rocky was awake and he was given water and within an hr….he was back in form….as if he had a long sleep.

With Neuro Surgeon Dr.Uta Tamaschke

So it’s all done now. We are now allowed to return home.

Doctor mentioned that we should be able to see changes from 2 weeks and can be upto 8 weeks. There were few more formalities and we left for home.

We met two more family in the recovery room, one from UK (originally from Bangladesh) and the other from Nevada. We hope to be in touch with all those wonderful parents.

With Will's Family

Doctor was good enough to share her contact details for any followup.

So, now it’s time to plan our return….to US

Interaction with XCell….Day – 1

Monday (02/15) was the first appointment with XCell. We reached their office at “Heerdter Lohweg 85″, after meeting our point of contact Dr.Bennay , we were taken to a Physical Therapy evaluation room, where Rocky was made to stand on a “Trade-mill kind of thing” , and Rocky’s foot pressure was measured. Immediately after that we visited a lady from Physical Therapy section and she showed certain therapy Technics that will be good for Rocky. [This lady is representing a different organization that provides "post Stemcell Therapy" therapies.] We have noted down some basic stuff (in fact have some video too).

Next we moved on to visit Dr.Tamaschke. At the front desk when we notified that we are waiting for Dr. Tamaschke…they immediately acted on it and provided us with quite a few documentation stuff.Like typical medical details/contract and etc.
As you might be aware, there are two procedures available and we were to choose one from them. The first one – Lumbur Puncture (cheaper – possibly less effective )and the second one Neuro Endoscopy (double the cost – possibly more effective).

There was a good crowd…at the place of PT evaluation…there were 7-8 other patients in their list, who were supposed to be evaluated on that day. So I guess they are getting around 7 patients a week.

A typical pattern of schedule is “Day – 1 : Monday – Therapy, interview with doc, paper work, payment”,”Day – 2: Tuesday – Bone Marrow Collection” and “Day 3 : Thursday – Stemcell Transplant”.

We were supposed to carry a recent MRI of Rocky…which we were carrying in our laptop …but Windows Vista won’t let the MRI application run….so our appointment with doctor Tamaschke was incomplete.
Dr.Tamaschke offered to continue with the discussion to second. So we had the opportunity to learn about Neuro Endoscopy and at the same time not take a decision at the spot immediately.

Discussion with Dr.Tamaschke
Dr. Tamaschke mentioned that Rocky is a good candidate for Neuro Endoscopy. We did not hear anything new from her , everything was expected. She wanted to view the MRI but unfortunately it won’t work.

She clarified one fact (when asked) , HBOT is probably good after stemcell. This interestingly coincides with the view expressed by one of the doctor who has been working hard for CP kids in India Dr.Mukherjee.
She, however mentioned that intensive therapy may not be required (actually she was opposing it).

Snowclad Dusseldorf

At XCell Center (1)

Interaction with XCell – Day 2

The doctor was looking for the MRI CD , and after few minutes she called us.

Interaction with Dr.Tamaschke
She was very excited about the MRI and details captured. She was very confident about how she will do the Neuro Endoscopy.
The difference between Neuro Endoscopy and Lumbar Puncture is
In case of Neuro Endoscopy, while releasing the cells, the doctor can confirm that the cells are sticking to certain parts of the brain, visually. This, kind of, ensures that the cells have reached the location they are supposed to. While in case of Lumbar puncture, the stem cells are injected in spinal fluid and everything else is left to “luck”, as far stem cells reaching the right location is concerned.

In case of Neuro Endoscopy, doctor says that patient can start showing improvement as quick as in 24 hrs but in case of lumbur puncture it can take upto 8 weeks to show any improvements. So far the doctor has done 500+ cases of neuro endoscopy and it looks promising to her. She could not confirm all the results as it is too early to conclude the results.

So now it’s turn for deciding “neuro endoscopy” vs. “lumbar puncture”

Few facts that we considered

• We do not expect Rocky to recover 100% on this treatment….no body can hope for that…which means we will have to continue with therapy. Note:Neuro endoscopy costs lot more.
  
• The neuro endoscopy, is lot more invasive than Lumbar Puncture…however I can lower the risk part, by trusting the doctor as she has done 500+ treatments.
  
• The results of neuro endoscopy like lumbar puncture is non-conclusive (or can’t be guaranteed)
  
• Lumbar Puncture obviously is not bad….they have 70% success rate (where patient showed some improvements)
  
• When we asked doctor, how will it be if we do not do Neuro Endoscopy now…but do it one year later…she said it will be perfectly ok….When I asked about the fact that Rocky will be one year older by then…she mentioned that it doesn’t matter.
  
• There may be some cheaper alternative (or even similar treatment) that will become available somewhere else…may be even in US in coming days, so that we won’t have to go to Germany.
  

Conclusion : Lumbur Puncture wins. [However we do think Neuro Endoscopy is possibly a better approach...but not the best given our context]
The doctor was very good to not enforce any treatment on Rocky…she left it to us. She offered us to keep the communication channel open so that we can follow up on Rocky’s progress.

The doctors cared for Rocky’s pain, they ensured that Rocky IV is left secured on his hand so that they won’t have to do another pricking on Thursday…which is scaring for any kid.

Rocky was back in 30 mins…and was almost ready to leave in slightly more than an hour. He was behaving very funny….and was in a good mood (as if he had a long rest).

So I am happy to say “so far so good”

Looking forward to putting back the stemcells into Rocky and pray that they reach the right location.

River Rhine from Dominikus Krankehaus (Hospital XCell -2)

Reached Dusseldorf

We are writing this entry from Dusseldorf,Germany.

We reached Dusseldorf at around 6:30 PM (instead of originally scheduled 11:15 AM), due to inclement weather condition in Atlanta. We were held inside plane for more than 4.5 hours before the plane actually took off , this is in addition of pre-boarding delay of 1.5 hrs. But other than this, the travel has been very issue less. Rocky is doing fine. Our friend who arranged for the buddy pass, helped us quickly go through all the process. Her presence definitely made our boarding very smooth. We had a nice seat arranged for us which made the journey very comfortable. Rocky slept well during the journey. Our friend with whom we are staying in Germany picked us up from Dusseldorf railway station. It has been snowing in Dusseldorf too. We have our first appointment on 15th Feb’10 at 1O’Clock.

Snow on our way to Atlanta Airport

Frankfurt To Dusseldorf ICE